Coping With ‘What Could Have Been’ in My Life With Chronic Illness:EDS-Drug rehab center

Also modest.

The thing is, my body isn’t so excellent.

One of the most difficult things to learn to deal with when you have a chronic illness is the curse of “what could have been.” Many people I know, people who have no health problems, have said to me, “Well, Natasha, that’s just life. You don’t always get to do what you want.” I would argue it’s so much more than that.

Getting ill at whatever age sucks, but when you’re in your teens and 20s, you’re supposed to be out there, living the life and doing all the things you’re supposed to be doing to at least try to create something. A huge amount of opportunities are taken away from you, and things you would take for granted just aren’t even an option.

A few of my friends, one in particular who this blog post is for, have been speaking to me recently about their feelings of unfulfilled potential. And trust me, I know how they feel. It’s the one thing I have to constantly push to the back of my mind in order to get through each day.

I have had opportunities, personally and professionally, that have been really fantastic and in some cases once-in-a-lifetime. However, because of my declining health, I’ve had to stop each and every single one of them. Managing my emotions around this is probably as hard as the physical act of having to stop. And while it still affects me, I’m getting more and more used to figuring out how to cope with it. But, I have to say, sometimes it really does affect me. And most people don’t see me when I’m a crying hysterical mess about it. It’s OK to grieve for what you feel like you’ve lost, and don’t let anyone tell you that it’s not. I just think it’s just incredibly important to not let it overwhelm you entirely and keep you stuck there. My mom has a rule that she’ll let me wallow for a day and then I have to deal with it.

My current way of dealing with life is that I just have to go with the flow. And honestly, this is the best advice I can give to anyone. Here’s why:

The last few months have been particularly bad health-wise. I had to stay with my parents at the house and was incredibly unwell. Then I felt a tiny bit better. And yesterday I had two hours where I felt better than I did in months. It was extremely exciting. And then my body crashed and I felt utterly rubbish again. It made me sad.

It was like a lovely little microcosm of my whole experience with chronic illness.

The lack of security in knowing when you’re going to be able to do things is the one thing that stands in my way when I’m trying to go out there and pursue the things I enjoy. After brief (read: several prolonged) freak-outs about not having a full-time income, I realized that no matter how much I wanted to be working a full-time job in a field that I’m passionate about, I’m just not well enough.

I’m trying to learn more about pacing and being sensible about how I look after myself. Pacing is the one thing I hate. I’m very boom-and-bust, but I think that’s quite common for many of us. I’d rather push myself to keep going, keep trying, keep fighting as much as possible, so that when I stop it’s not my decision, but my body forcing me. But I’ve realized that stopping and resting, truly resting, is the one thing that I can do to try and make sure that I’m listening. Now when I do an activity that I know is exhausting, I won’t spend hours afterwards working in bed (that’s not resting!) and I’ll make sure to really plan what I’m doing to try not to make myself worse.

When I talk about not pushing, I don’t mean just stopping and giving up. It’s really important to learn your limits and to keep trying new things, even if you have to stop. Find compromises and be proud of small accomplishments.

I’m interested in too many things to have a fixed goal, and I don’t like them anyway. I need to be able to be flexible (ha, Ehlers-Danlos syndrome joke) enough to make changes to what I’m doing while trying not to get too upset if I can’t do something that I want to because I’m not well enough. Accepting that is really important. It’s not using my health as an excuse. It’s accepting where I am right now physically, and making sure I’m doing everything I can to look after myself.

One thing I have never struggled with is guilt. I don’t somehow blame myself for the way I feel. It’s not me, it’s not a reflection on me. It’s my body. I have a condition that I was born with. My Ehlers-Danlos syndrome collagen dysfunction has buggered me up. That’s not my fault. I never see my inability to go and do things as my fault. I don’t feel guilty about it. I know with all my heart that I try so hard every day just to keep going. That anything I do on top of that is a big deal. Seeing small things as victories seemed super lame for a really long time. But it’s vital to start understanding that they are.

Is it frustrating? Of course it is. But if there’s any advice that I can depart in a tl;dr kind of way, it would be this:

1. Never give up — find compromises and things that keep pushing you forward. For me it’s my course, teaching myself to code, doing small flexible freelance jobs (I am determined to find work that is me-friendly. It may not be for a big company, but I know I have enough to offer that I can find a way to make it work) and writing this blog

2. Celebrate your small victories.

3. Don’t feel guilty if you can’t do what you thought you would be doing.

4. It’s OK to grieve for what you wish you had.

5. You’re still you.

6. Find a support network and people that understand you without you needing to explain.

7. Your life isn’t over, it’s just going a different way than you thought. Channel that into something else, no matter how small. Even if it’s finding the energy to make some food or have a shower.

8. You’re not the only one going through this and the more we all try and raise awareness, the more support (hopefully) we will get.

By

Natasha Lipman

 

Ehlers Danlos Syndrome: Living With EDS And Finding Treatment- Term life

‘What it feels like… To fundraise to save your own life”

In January, Jessica Kill, 38, was diagnosed with a devastating condition. Now she has three months left to raise enough money for surgery.

‘It was last Christmas when I realised something had gone really, horrifyingly wrong. My sons and I were at my mum’s house in France, but I could barely get through the day without needing to lie down. They’d go for long, wintery walks – playing and laughing and full of energy – while I had to stay behind, spread out on the sofa and trying not to be sick. I couldn’t drink because I already felt so dizzy, and my head hurt. I tried to push on through – I thought this was just ‘another one of those things that happened to me’ – but by the time we got home from the holiday, my speech was slurring and my tongue was numb. I figured I’d had a stroke.

I’ve been sick my whole life, but I didn’t know it until seven years ago. At 31, I was working in projects and had a vibrant social life – but I’d spent my 20s in and out of doctors’ surgeries with various ailments. My joints hurt a lot – that was ‘growing pains’. My stomach was bloated – that was ‘IBS’. My energy levels were down – that was a ‘defficiency’. It was endless, but every time I asked for help, I was told I was just ‘unlucky’, and that I needed to take a different combination of vitamins, or pain relief, or mix up my diet a bit. I was constantly in pain, but nobody was taking me seriously – one doctor even suggested that I was ‘just stressed out’ from being a single working mum. So when my rheumatologist eventually diagnosed me with Ehlers Danlos Syndrome, I felt sheer relief – like I was actually quite strong for coping for so long. I could do physio. Things could get better.

That feeling disappeared in January. As my dad freaked out about my slurred words, I headed to the hospital and tried not to fear the worst. But while the doctors kept me on the stroke ward for a week, they eventually decided that wasn’t it. I asked whether it could be CCI – Cranial Cervical Instability – a condition linked to EDS, which sees your skull slowly crush your neck, causing constant pain and eventual paralysis. They said they didn’t think so, and sent me home. I love the NHS – I think they’re amazing – but as I lay in bed back in Birmingham, I just knew they were wrong.

As a project manager, my whole career has been about research, so I took things into my own hands. Normally, I’d never recommend using Google as a means of self-diagnosis, but when you’re already suffering from an incredibly rare disorder – which experts have already said is the most ‘neglected’ condition ‘in the history of modern medicine’ – then you have to take charge of the situation. I discovered that in order to be officially diagnosed with CCI, I needed to have an upright MRI scan. That’s no big deal in America – most large hospitals can do that for you, easy peasy. But over here, you have to go to London and pay privately for the procedure. My family lent me the money, but this time when I received the results, I was devastated. In the UK, CCI may as well be a death sentence. There’s very little research into its treatment, and it causes rapid degeneration. For years, I’d just picked myself up and carried on, regardless of how difficult life became. This felt like too much to handle.

My sons are eight and 16, and I’m a single parent, but suddenly the days of navigating lego instructions and negotiating curfews were gone. We used to go for holidays in Cornwall every Easter and play on the beach, but this year, we stayed at home. My symptoms were getting worse, and even with a hard plastic neck brace, it hurt to move. Without being melodramatic, it actually hurts to smile. My eldest son knows I’m really sick, but he starts his GCSEs in a couple of weeks and I’m trying to protect him from the realities of my condition until his exams are over. The youngest just wonders why I’m not fun any more. My children are my whole world, and it breaks my heart to let them down. But that’s what I feel like I’m doing right now.

For the first time in my life, I’ve had to take long term sick leave from work. Even getting out of bed in the morning feels impossible because I’m in so much pain. At the moment, I can just about do it, then the childminder takes my kids to school and I lie down on the sofa to recover. I’ll get up to do some washing – then I’ll go and sit down again. By the time evening rolls around, I try to push through the pain to make dinner, but reading practise and homework has to take place in bed. The next day I do it all again.

If this was just my life now – if there was no cure – then I’d have to accept my fate. But there is an operation that could save my life and and dramatically reduce my symptoms. It’s just not available in the UK. It’s not even available in the rest of Europe – if it was, the NHS would pay for me to have the procedure overseas. Instead it’s only performed in America, even though it has a 95 per cent success rate. That means that it’s down to me to fund it – all £150,000 of it. Otherwise I’m sentenced to a life of constant pain, paralysis and organ failure. I’ll need to be fed with a tube, and I’ll have to sleep with a machine so that I don’t stop breathing. I won’t be able to play with my sons, and I won’t be able to work. It’s a horrifying prognosis, and it scares me deeply.

I don’t like asking people for support, and I hate asking people for money. But while my friends are amazing, and my family is constantly there for me, we can’t do this on our own. I’m learning that independence only gets you so far – sometimes, you other people to lean on. Because I don’t want to give up – for me, and for my children, I’m not ready to be defeated. But at the same time, I feel like I’m waving my own white flag. I need help. And I need it now.’

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Why I’m Thankful for the Doctor Who Admitted He Didn’t Know About Ehlers-Danlos Syndrome- Term life

Imagine having a disease where 99 percent of the population has never heard of it. Now imagine included in that group are medical professionals. Or if they’ve heard of it, it was just briefly in school, not since then, and now you appear like a sparkling zebra out of a story book. This is my life.

I have Ehlers-Danlos syndrome (EDS), and basically this means that due to a genetic defect in my collagen, I have all-over weakness, joint instability, severe pain, fatigue and multiple comorbidities. EDS literally effects everything in my body from my skin and my blood vessels to my digestive tract. Even though I have shown signs of EDS since infancy, it took 32 years for me to get a diagnosis. Living with pain is something I have unfortunately gotten used to over the years. From eight surgeries forendometriosis and my gallbladder (endometriosis can be associated with EDS), to daily back and joint pain from my hypermobile joints that bend the wrong way and can sublux at any time (ever sublux your shoulder while sleeping? Good times!).

The one thing I will say has been harder for me to accept as someone living with an invisible illness is the lack of knowledge and understanding from just about everyone. If I only had a dollar for all the nasty stares I get when I pull into the handicapped spot, using my placard that my doctor approved for me. Or the comments “You’re too young to have so many problems.”  “You look fine to me,” said by a doctor!  “You need to eat a steak,” said by a rude older man at the grocery store, in reference to my small size.

Recently my husband and I packed up our family (two pit bulls and a kitty) and moved to Florida in hopes that the warmer weather would help. In trying to find all new doctors, I yet again was faced with a challenge of being a zebra in a herd of horses. In medical school they teach an analogy: When you hear hoofbeats, think of horses not zebras. This is to teach doctors to think of the most common things first. But zebras do exist, and this is why the zebra is the mascot and ribbon color for EDS.

After being outright denied by some doctors, without even an explanation, I finally was offered an appointment with one, and I was nervous but hopeful. This doctor came into the room and couldn’t pronounce Ehlers-Danlos! He made several incorrect statements about my disease and after a short while, when I was certain he was going to be yet another one of those doctors who saw me as a faker, drug seeker, and who was clearly uneducated and unwilling to help me, I left as quickly as I could. I had to pull over a block away because I was sobbing. How is it that medical professionals don’t know what to do with me? Why can’t someone help me?

Later that day my phone kept ringing. It was that doctor’s office. They called and called. Finally the next day, the doctor left a voicemail. When I called back, he admitted that he didn’t know about EDS; they only learn very little about it in school and it’s rare to ever see it again in practice. He had researched my condition and was willing to keep learning in an effort to help me manage my symptoms and live a better life. I can honestly say this has never happened before. I’ve been told by many doctors they can’t or won’t help me. I’ve been told (pre-diagnosis), “You probably have that, but no point diagnosing you, because nothing can be done to help you.”

I couldn’t believe what this doctor was saying in some respects. Yes, I was very, very aware of the lack of knowledge and understanding of EDS among the medical community. But for him to actually admit it and say to me that he wanted to help me, wanted to do more research in order to better care for me, that was shocking. No doctor had ever said that to me before. None had ever expressed a desire to further their learning in order to help me. Why aren’t there more doctors like this, I’ve thought? Why aren’t others willing to learn to help their patients?

So needless to say, the doctor that made me cry in my car, that I thought was just another doctor who was unwilling to understand, has become my new doctor. I was so wrong about him and I’m so glad I gave him a second chance and thankful that out of the tons of doctors I’ve met, I’ve finally found one willing to help me. It also makes me sad, not only for me but for the thousands of others out there that suffer from EDS, that this is such a shocking occurrence. In my opinion, this should be the norm, not the rare. It’s almost like finding a doctor willing to help a zebra was like finding a zebra of my own. So very hard to do!

I finally felt like someone understood after talking to my new doctor. He now gets just how hard it is for someone like me (and the many others who suffer with EDS) who go for years being told they’re either faking or misdiagnosed. No one should have to go 32 years to get a diagnosis because the medical community lacks knowledge in their disease. It’s an amazing feeling to know my search is over. Years of always searching and holding your breath, each time you see a new doctor. They label you a “doctor shopper” all because you have your best interest at heart and you see doctor after doctor, looking for someone who understands, someone who treats your condition and is willing to help you.

It is my wish that everyone who doesn’t know about invisible and rare diseases educate themselves, and learn that they do exist, and to be sensitive to people suffering from them. The judgment and lack of understanding hurts so much deeper than the physical pain. I hope one day our doctors and nurses will be better educated on rare diseases. My story is not unique. For all the other zebras out there who share a rare disease, please keep looking. Your doctor and support system is out there, too. We all have to be there to help each other. Don’t give up. Help is out there.

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Why I Advocate for Self-Diagnosing- Term life

A huge stigma about self-diagnosing exists among the medical community — how it’s a bad thing; if you tell your doctor “I saw X online” they automatically brush you off and label you as a hypochondriac, drug seeker, etc. All of this is what I was afraid of when I went in to tell my doctor (who I’d learned about online).

I’d been struggling trying to figure out what was making me feel so awful for a long time; I just wanted answers. My doctors couldn’t find them; they kept saying everything was OK. I did all of those “symptom checker” things online where you put in all your symptoms and it tells you what may be wrong — I got desperate because I had no idea what was going on in my body. But they were all 110-percent unhelpful.

Then, an Instagram account I had for my dogs actually became beneficial instead of just a way to kill time. I’d get on while I was bored or couldn’t sleep. I was following a few girls with service dogs who posted about their chronic illnesses. One night, I clicked on #spoonie on Instagram, looked at all the posts and saw a lot of people post about Ehlers-Danlos syndrome (EDS), among tons of other things.

Being the nerdy medical person I am (hello, I’m a nursing student!), I looked up all the medical terms and diagnoses I didn’t understand. Initially, it was purely for the sake of “oh, what is that?” but at some point it became about “maybe one of these people has whatever I have.” When I looked into EDS the first time, I briefly read
about it, figured out what it was and didn’t take it any further because it’d been an “what is that?” search. I didn’t think I have it since none of the main symptoms of what I found online really fit what I felt. But one day I came across it again on Instagram; a girl had posted a picture with all the symptoms included in her EDS diagnosis, most of which I felt; some things I didn’t even realize were “symptoms” were on the list, and it really resonated with me. I researched EDS as much as I could, considering there’s really not much about it out there, and realized “this
is me.”

I’d been to doctor after doctor for years. Some ordered tests, others didn’t; some cared, others didn’t; some believed me, others didn’t. I started to feel crazy. Do you know what that feels like? To think to yourself “Am I really this sick? Is it really in my head? Am I really just being dramatic about it? Am I unconsciously looking for attention? Is this how everybody feels and I just can’t handle life? Am I really this weak?” It’s an awful feeling to question your own sanity because you’ve been told so many times there’s “nothing wrong” with you. I hated it. People will tell you not to let it get to me, but when a doctor, the one person who is supposed to want to figure out
what’s wrong with you, tells you you’re fine, you start to wonder if you really are perfectly OK. Finally after two years of playing around with a handful of doctors and a specialist, my PCP finally decided I should see a rheumatologist.

It was around this point that I’d learned about EDS and “spoonies” and Postural Orthostatic Tachycardia Syndrome (POTS), but because of the stigma of self-diagnoses, I knew I had to be careful when I saw the specialist: during out extensive conversation I mentioned a bunch of symptoms I had, and she handed me a pamphlet on benign hypermobility syndrome (which, is actually not the same as EDS).

The day I self-diagnosed changed my life. Had I not figured out what was wrong, had I not advocated for myself, I may not even have a diagnosis now. I could still be questioning my sanity and feeling like a failure for not being able to do “normal” things. Now I realize there’s a reason for every single thing I feel, and it’s my new normal for me to not do some things others can do. I finally got the push from one doctor to see several others who were able to help me get some of my life back.

Self-diagnosing isn’t something to take lightly. When used correctly, it can be a tool to help you and your doctors understand what’s wrong. And if your doctors disagree with what you’ve found online, you may have to trust them to try to figure out what else it may be.

There is always a chance I could have been wrong in what I researched, in what
I believed I had, and if she’d told me no, she thought I had something else, I would have considered that as well.

Doctors are trained to think horses, not zebras, when they hear “hoof beats” in medicine, and that’s reasonable; you can’t assume everybody always has the “worse case scenario.” They also have a process of elimination for diagnosing, which I think is reasonable, and I think people should respect that. But I am the person who needed the unreasonable; I am the zebra they’re trained not to look for right away. There’s a whole herd of us out there, and we really have to advocate for ourselves (which often includes self-diagnosing) because at the end of the day, we are the ones the doctors aren’t expecting to see, and we can’t let our care suffer because of that.

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31 Random Facts About Ehlers-Danlos Syndrome-Term life

31 random facts about Ehlers-Danlos Syndrome (prounounced AY-lerz DAN-lowz), also known as EDS. It is a group of genetic disorders that are actually NOT rare – only rare to be properly diagnosed by a doctor who is knowledgeable about EDS. Every person has a different set of common symptoms, no 2 are exactly alike, because it is caused by faulty collagen – the glue that holds our bodies together. Spreading awareness is the key to helping more people get properly diagnosed.

1.Inherited genetic disorders

Because each EDSer is different, members of the same family can have greatly varying symptoms. One may live a relatively healthy life with almost no symptoms, while their family member uses a wheelchair and feeding tube.

2. There’s no such thing as “double-jointed”.

 

 

 

Hypermobile joints cause chronic, painful dislocations and subluxations. As we age into our 20s and 30s, this can also cause arthritis, and we become more stiff and less flexible.

3. Connecting the dots…

 

Until someone learns about EDS, it can be hard for them to connect the dots between their migraines, digestive problems, blood pressure, back pain, and heart problems all being about connective tissue.

4. Born this way.

 

*worst

5. Pain from 0 to 10 in .5 seconds.

Expending energy, just moving the wrong way, or sometimes even the weather can sometimes leave us in days of pain. Please keep inviting us, because we will go when we can! We want to!

6. Handle With Care

This is especially true with Vascular Ehlers-Danlos Syndrome, also known as VEDS.

7. Inflammation sucks.

 

Actual heart attacks are more likely with VEDS.

8. EDS and Insomnia

These adrenaline issues are also why we are more prone to anxiety and panic attacks. We are also often up with painsomnia – when we are in too much pain to sleep.

9. POTS

Postural Orthostatic Tachycardia Syndrome, also known as POTS, is very common for those of us with EDS. We often have blood pressure that is too high or too low, and can have dizzy fainting-like spells. Showers and hot tubs can be dangerous for us.

10. Velvety soft skin.

Often described as having the skin of a newborn and joints of an 80 year old.

11. Neck pain.

Having a gentle massage therapist who is knowledgeable about EDS can be crucial. Just another reason we need to spread awareness!

12. EDS and Pregnancy

Younger women with EDS tend to have less problems with pregnancy, but there is still a 50% risk that the child will have EDS, as well. It is a very personal and difficult choice to make, especially in the late 20s and older.

13. Vascular Ehlers-Danlos Syndrome (VEDS) kills.

Find out more information about VEDS from the Ehlers-Danlos National Foundation http://ednf.org/vascular-veds-emergency-information

14. Genetics

There are several different types of EDS, and there can be different types within the same family through mutation. But the symptoms can vary so widely from person to person, that genetic testing is the best way to know for sure.

15. Center for Clinical Care & Research (FINALLY!)

Ehlers-Danlos National Foundation has partnered with the Greater Baltimore Medical Center (GBMC) to establish the EDNF Center for Clinical Care & Research at GBMC’s Harvey Institute for Human Genetics. Open August 2014.

16. EDS & Anesthetics

 

We can have low absorption of many things – pain killers, vitamins and minerals, and yes – anesthetics.

17.
 

Also to stretch our bodies.

18. Forgot what I was saying…

It’s on the tip of my tongue! Why am I suddenly so tired and can’t remember anything? Argh.

19. Chronic Fatigue

Chronic Fatigue Syndrome, also known as CFS, affects people will all sorts of chronic illness. Those of us with chronic fatigue are also known as #Spoonies. See Christine Miserandino’s Spoon Theory for more info on that! http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

20. Fingers that sometimes won’t fing.

 

21. Why the Zebra?

 

22. TMJ can be worse than TMI.

Brushing teeth can suck when your jaw gets stuck.

23. Invisible Illness (for some)

 

We may not need any assistance one day, and a wheelchair the next, and then just a cane the day after that. Cleaning the house can mean having to rest in bed for a week. Again, see: The Spoon Theory http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/

24. Digestive problems… gut instinct.

 

25. Changes

 

We never know when or where we will be in sudden excruciating pain.

26. Testing, testing, 1 2 3…

This is why raising awareness of common symptoms of Ehlers-Danlos Syndrome is SO important. You don’t know whose life you could change for the better, just by helping them find answers.

27. EDS and Chiari Malformation

 

Chiari is yet another congenital condition (meaning you’re born with it) that can be common in those with EDS.

28. Slipping ribs hurt.

Can be caused from the way a bra pushes against a rib, cuddling, coughing, hormones, stress, weather, sitting in a particular position for an extended period of time, driving, etc.

29. Compensating & problem solving:

 

*witty

30. You can help!

 

Care. Share.

31. What doesn’t kill us makes us stronger.

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Ehlers-Danlos Syndrome: the lengthy road to diagnosis- Term life

For people with Ehlers-Danlos syndrome, a genetic disorder affecting the strength of collagen that provides the body support, structure, and stability, the road to diagnosis can be lengthy. The reasons for this can differ from person to person, but are often related to confusion over the multiple types of Ehlers-Danlos syndrome and the many signs and symptoms associated with the condition.  We most frequently see the hypermobile type of Ehlers-Danlos Syndrome (EDS-HT) in our Connective Tissue Clinic.  From growing pains to grown-up pains, here are the most common scenarios we see:

  • An active nine-year-old girl sees her doctor because of pain in her legs at night and pain in her hands when writing at school.  She describes her leg pain as “all over,” but says they go away with Tylenol.  Her doctor reassured her family that these are “growing pains.”
  • A 13-year-old girl begins having problems after spraining her ankle playing soccer.  Healing takes a lot longer than expected and when she returns to the game, she dislocates her shoulder. Two additional surgeries are required because the shoulder “falls out” after the first.  Over time her neck, hips, knees, and ankles develop chronic daily pain that interfere with her concentration and make it difficult to sleep.  Headaches become a daily occurrence and some of them cause her to leave school early.  She also begins to feel dizzy and “blacks out” with standing.
  • A 40-year-old woman with fibromyalgia, chronic fatigue syndrome, and chronic migraines researches her symptoms on the internet and realizes that many of her problems are frequently seen in EDS-HT.  However, she does not think her joints are flexible, which is part of the diagnosis.  She remembers that in grade school she could “freak out” her friends by the way she could bend her fingers backward.

While these examples are three separate but typical scenarios for someone with EDS-HT, they can actually describe the progression of one person’s EDS-HT symptoms over time.  What can look like a mild problem in children can accelerate in adolescents and teens, becoming a condition with debilitating pain.  It can be tricky to diagnose in older patients because the flexibility can decline over time.  It is important to know that symptoms in EDS-HT are highly variable and not everyone will experience pain and/or functional limitations to the same degree—if at all.  However, with early recognition, interventions such as physical therapy can improve the stability of joints and stop the progression of pain—possibly before it even starts.

So as a parent, how do you know when to acknowledge your child’s pain as being part of normal childhood “growing pains” and when to be more concerned?  With EDS-HT, the first place to look is at the joints, which in childhood will be loose.  Signs of joint laxity, sometimes called “double-jointed” include being able to:

  1. Bend your little fingers back beyond 90 degrees
  2. Push each thumb to the front of your forearm
  3. Bend your elbows backwards
  4. Bend your knees backwards
  5. Being able to place the palms of your hands on the floor while keeping your legs straight

If your adolescent or teenager is struggling with pain in different parts of the body, along with exhibiting some of the above double-jointedness, this scenario may warrant further evaluation. Dr. Goldschneider offered descriptions of pain experiences in patients with EDS-HT in a previous blog post, for those who are interested in more specific examples.

If your adolescent or teenager has already been seen by a medical provider and you still have concerns, a clinical geneticist or doctor that specializes in connective tissue disorders may be able to provide further answers.  He or she will conduct a thorough medical and family history, along with a physical exam that will evaluate for the different types of Ehlers-Danlos syndrome.  With a confirmed diagnosis of EDS-HT, an individualized and comprehensive management plan can be developed to ultimately help your adolescent or teen attain a better quality of life.

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My Wife Had EDS and Did Not Know it- Term life

My wife died in 2008, the same year my daughter was diagnosed with EDS. We have dedicated a new program in her memory.We are helping to form new EDS Support Groups and creating a directory of EDS Support Groups. We are also hosting 2X monthly live EDS Educational webinars.

My Wife Had EDS and Did Not Know it!

We were married for 41 years. You’d think that after all of that time you would know everything there was to know about a person.

– I knew Carol was a loving person who would do anything she could for the kids and the family.

– She was a social worker and very concerned about the comfort of others

– She didn’t complain and didn’t want others to worry about her.

The symptoms started shortly after we were married in 1967. Carol was a very energetic lady who had just graduated with honors and a master degree in guidance and counseling and she was anxious to start this new career. She also was somewhat a “perfectionist” who wanted to keep the house clean and organized … but started to develop some pains as a result of all of this. I remember we attended the Lamaze classes in 1969, when she was pregnant with our first daughter. The instructor commented at how “flexible” Carol seemed to be during the exercises. Our first daughter Deborah was 4 weeks premature and the second daughter Deanna was 6-7 weeks premature. We joked that if she got pregnant again we would have to carry around a basket to be ready for the next one.

Carol’s joint pain got more severe in the 80s. She was the first director of a new “Crisis Hotline” in the Cleveland, Ohio area and she was working unusually long hours. With all of these mental and physical stresses she was going to a chiropractor monthly and then weekly. She was getting massages on regular bases. Initially, her neck, back and shoulders were the major issues. Then she developed chronic problems with her hips, knees, feet, etc. The doctors did not seem to understand her pain and they could only recommend pain medications, topical creams or muscle relaxers. It did not seem to help. She was diagnosed with Thoracic Outlet Syndrome, TMJ and maybe Fibromyalgia … but they were not sure.

She could only sustain working for a few more years with flexible hours, then it got to be too much for her physically.

She described her constant pain as “achey or throbbing”. She had frequent episodes of radiating pain, stabbing, ’pinched nerves’ and numbness. She would say things like ”I will hurt myself if I reach or stretch for that item, or if I bend that way or if I twist my body.”

She would describe affected parts of her body as: shifted, twisted, crooked or her favorite word “dis-combobulated” (meaning everything is zig-zag and out-of-whack).

We had never heard of joint hypermobility or Ehlers-Danlos Syndrome (EDS). We did not know that her symptom descriptions were suggestive of unstable, loose joints.

Soon, I discovered that I was taking over the household tasks of cleaning, doing the dishes and the laundry. Some family members commented that Carol “looked perfectly fine” – so she must be lazy and just taking advantage of my help. I knew there was a problem with her pain, but I did not know what it was or what else to do to help.

In addition, Carol had severe environmental allergies, IBS symptoms and an extremely “sensitive” stomach. She avoided certain foods, spices, and oral medications due to this. Her allergies often put restrictions on where we went out for dinner or social activities and where we purchased certain items – always avoiding chemical odors, dust, pets and cigarette smoke, etc.

Carol had very flat feet and was prescribed orthotics. Her feet were always hurting and finding comfortable shoes was challenging. She had very sensitive hearing and was a very light sleeper. Even low volume noises or voices in the next room would wake her. Pain and disturbed sleep meant she always woke up exhausted!

Carol had a lot of extra pain if she tried to carry something that was awkward or too heavy (ie. weighing more than 2-5 lbs., depending on her pain level that day.)… By age 8-10, my daughters could carry heavier items than Carol could, so the kids and I did a lot of the fetching, carrying and cleaning for her. I made most of the meals and, got the kids off to school.

As a result of her sleep problems and pain, she was in bed until the kids got off the schoolbus. The girls would run upstairs to the bedroom, eager to spend some quality time with mom – as she was getting out of bed in the middle of the day. Moments like these with her girls gave her some comfort and support. The girls remember these as a special times, but they sometimes felt embarrassed – they could not tell anyone that their mother was in bed all day.

Carol’s muscles were always tight, and she often described her pain as if “one part of her body was pulling at another”. (For example, my shoulder is pulling on my neck.) The only exercise she could tolerate was very slow walking – that is, if her hips were having a good day. She loved walking slowing, at sunset, in the park. She had pain driving a car and searched extensively to find the most comfortable car – so that she could remain independent. It was very stressful for her to be a passenger in a car; she would try to brace herself for the starts/stops, bumps, and turns. If I was driving, she would request alternate routes for straighter roads. Even gradual curves on the highway caused additional neck, shoulder & back pain. We would sometimes go 3 or 4 miles out of our way to find a smooth straight road for her to travel on.

We never knew these were telltale symptoms of joint hypermobility.

She was always very discouraged that the doctors did not believe her and she stopped telling them about her pain because the tests came back “normal”. She was told there was no treatment or even a REASON for her pain…. Doctors told her she was overly-sensitive, exaggerating, or “Oh! it’s just all in your head…”

It really bothered her that her medical records said all those bad things about her “mental state”. She tried at times, in vain, to get the records changed. She knew that when she was depressed, it was due to fatigue, lack of sleep and pain. Not because she was making up things to be sad about.

We continued to play out this very difficult lifestyle for decades – until Carol was diagnosed with breast cancer in 2002. The continuing pains, surgeries and chemotherapy took its toll on her and she had a major struggle with clinical depression for a long period of time. After that she was on so many medications that they masked many of the original symptoms.

Carol passed away in 2008 of breast cancer… the same year my daughter, Deanna, was diagnosed with EDS. In her early 20s, Deanna developed many of the same symptoms and pain as her mom had. They often talked about the similarities and offered each other comfort and understanding. Looking back, Deanna recognizes that her back & joint pain during her child and teen years, wasn’t normal.

Deanna heard about EDS through an EDS patient who worked at a local cancer support center… NOT from a doctor. This EDSer took the time to notice Deanna’s wrist braces and ask her about them. Then she told her about EDS.

This encounter was 10+ years too late! More than 10 years prior to this, Deanna was diagnosed with instability in both wrists by an orthopedic specialist at a well-known hospital. The doctor gave no explanation about hypermobility. He did not mention that she might have a similar condition in any other joints (despite the pain.) The treatment was pain medication and one visit with the occupational therapist for “strengthening” exercises – which made her pain worse. Deanna’s joint pain and other EDS symptoms continued to escalate rapidly during the 10 years between her potential diagnosis and her actual EDS diagnosis…

If only SOMEONE had told Carol about EDS… it would have saved both mother and daughter much suffering, loneliness and judgment. I don’t have room in this article for all the details about how undiagnosed EDS harmed my wife & daughter’s lives. Just believe me when I say emphatically – had they known about EDS, their lives would have been dramatically different!

Tell someone about EDS everyday – I do! YOU could improve a life, or even save one!

Each year, only 5% of EDS sufferers are diagnosed with one of the 6 major forms of Ehlers-Danlos Syndrome. It is estimated that EDS affects more than 1 in 5000 people worldwide, not to mention over 650,000 sufferers per year, in the United States, who go undiagnosed due to physician oversight or lack of knowledge about the condition. Many afflicted with EDS – and the people who care for them – don’t know where to turn for information, advice and help with the issues surrounding EDS such as treatments, therapies, practitioners and products to assist in managing the symptoms. The majority of those who are undiagnosed do not know this disorder exists and are left on their own, struggling to find a reason and a name for the pain and suffering they are experiencing.

Ehlers-Danlos Syndrome (EDS) is a genetic defect in collagen protein (the “glue” that supports and holds the body together). EDS causes chronic pain, joint hypermobility (“double-jointedness” and fragile joints) and affects multiple other body systems. There is no “fix”- no medicine or surgery – that resolves this condition.

Many of those suffering from EDS are never diagnosed during their lifetimes. They suffer in pain for many years and die still not knowing why they had the pain.

Carol can finally rest in peace. Love eternally, John.

Source

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Medical Kidnapping in Maine: Child with Ehlers-Danlos Syndrome & Sister Seized – Grandfather Commits Suicide-Term life

UPDATE 10/29/2015

From the Reunite the Ross Family Facebook Page:

For those of you that have been waiting for an update, here it is:

18 months after we took Ryder to his doctor with concerns over his swollen leg, 16 months after my husbands name was wrongfully tarnished, 12 months after a highly anticipated trip to a world renowned specialist in Boston, 11 months after we shared our story with the state of Maine, 7 months after we told the world our story on 20/20, and after countless tears and prayers ROZALYNN AND RYDER ARE HOME FOREVER! We are so thankful for this journey, for all we have learned, for those who have helped us through, for those who have tirelessly cared for our children, supervised visits, attended numerous meetings and appointments, and spent hours in uplifting conversations. Thank you!

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.”
Jeremiah 29:11-13

UPDATE 7/8/2015

From the Reunite the Ross Family Facebook Page:

The State of Maine continues to pour more salt on the wound. We had hoped that the case would be dismissed as Brandon’s criminal attorney has not been given copies of the new x-rays which show at least one new fracture.

Please continue to pray, share, and tell everyone you know about our plight. GOD BLESS YOU ALL!!!

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WMTW Story here.

 

UPDATE 6/26/2015

WMTW-TV in Maine did an update on the Ross family after our report:

Lawyer wants new X-rays as part of abuse defense

by Health Impact News/MedicalKidnap.com staff

In November, we shared a story with you regarding a two-month old baby boy by the name of Ryder Ross who was allegedly kidnapped from his parents due to a genetic connective tissue disorder called Ehlers-Danlos Syndrome. (See: Child with Ehlers-Danlos Syndrome taken from Loving Family by Doctors.) Ryder is now fifteen months old and is still in the state’s custody.

Brandon and Cynthia Ross became concerned after noticing their baby’s leg was swollen. Even though Ryder was not crying excessively, had no bruises, red marks, or any outward signs of injury other than the swelling, the couple took him to the doctor for an examination.

After performing some x-rays and finding the infant with multiple fractures throughout his body, the doctors sent the family to the Maine Medical Center (MMC) for further evaluation. Before the couple understood the depths of the evaluation, they were deemed guilty of child abuse by officials at MMC.

Six days after Ryder was admitted to the hospital, the state of Maine chose to remove both Ryder and his two year old sister Rosalynn from their parents’ care.

Inconclusive Test Results

Ryan Ross. Image supplied by family.

Numerous x-rays and tests continued to be administered. Ryder’s family listened to doctors admit their tests were inconclusive, that there were different probabilities and possibilities, but there were no concrete findings. For example, one test showed Ryder had multiple fractures, yet another test revealed no fractures at all. Blood tests showed alarming vitamin D and calcium levels.

Several weeks passed before a doctor from MMC reportedly admitted abnormal vitamin D and calcium levels in Ryder’s blood could quite possibly be linked to a medical condition that may have caused the injuries. However, after meeting with other members of his team, the doctor allegedly dismissed that idea.

Follow-up testing was performed only after demands from Ross and Cynthia were made.

The state deemed the parents guilty of child abuse regardless of the inconsistencies in their testing results and placed the infant in foster care.

Arrested Without Proof of Guilt

Brandon-Ross

Brandon Ross with Ryder and Rosalynn. Image supplied by family.

On June 12, 2014 Brandon, a twenty-five year old father, was indicted on twelve counts of child abuse and was arrested by Bath, Maine police. After being transported to the local jail, he received death threats from other inmates. The threats were taken so seriously that the jail provided Brandon with private accommodations for his safety.

Baby’s Grandfather Commits Suicide Due to Mental Anguish Caused By State

On Father’s Day of 2014, just days after Brandon’s arrest, after telling the family he believed the state was out to get Brandon, Ryder’s seventy-four year old grandfather committed suicide, after writing a note falsely claiming responsibility for Ryder’s injuries.

In October of 2014, the true cause of the baby’s fractures was finally discovered. The little guy suffered from Ehlers Danlos Syndrome (EDS). He, his mother, and his grandmother were diagnosed by Dr. Michael Holick at the Boston University Medical Center. Some of the symptoms of the various forms of EDS include calcium and vitamin D issues and more importantly, fractures.

State’s “Experts” Disagree With Medical Findings From Outside Their Sphere Of Influence

Ryder recently fell when running and sustained yet another fracture, while in the state’s custody. Dr. Lawrence R. Ricci, M.D., of the Spurwink Child Abuse Program stated this on a Medical Evaluation form dated 05/12/2015

“This fracture in no way alters my opinion that the initial constellation of injuries was abusive. This is also taking into account the prior expert witness reports offered by the parents, both about rickets and Ehlers-Danlos syndrome, neither of which do I find in any way convincing… I would note that there is no literature that I am aware of where Ehler’s-Danlos syndrome has been described as causing any fractures in infancy, much less fractures that are quite characteristic of child abuse.”

When we shared this story in November of 2014, Dr. Jeff Milunsky with the Center for Human Genetics in Cambridge, Massachusetts, who sees patients with Ehler’s-Danlos Syndrome from around the world, was quoted as saying, “A patient can present from newborn with fractures, dislocations, hip dislocations…”

A skeletal survey was performed on May 11, 2015 and the Ross family was able to view the survey on May 12th in the child abuse pediatrician’s office. Cynthia said,

“Along with the buckle wrist fracture, Dr. Ricci pointed out a left-clavicle fracture that was completely healed. I pointed out that this fracture did not exist previously, and he told me that he was quite sure that it had. My husband and I also noticed very clear signs of metabolic bone disease in Ryder’s x-rays.”

Currently, Cynthia is allowed to have supervised therapeutic visits with her children twice per week. She is also allowed to pick the children up from daycare on Friday evenings and keep them under monitored supervision at her grandmother’s house until Monday mornings arrive. Brandon is allowed to join them under direct supervision of either Cynthia’s mother or grandmother from 8 am until 8 pm on Saturdays and Sundays.

20/20 picked up Ryder’s story. On the same day ABC posted their press release, the Ross family received a phone call from their attorney stating that the DHHS (Department of Health and Human Services) had requested a permanency hearing. The state wanted to terminate Brandon and Cynthia’s rights, but there was no evidence. Now, DHHS is apparently trying a different approach.

On August 6th, a settlement conference has been scheduled, where the state is hopeful that an agreement can be reached on the permanent placement of Ryder and Rosalynn. The state had given the Ross family a deadline of July 2nd to submit any evidence they have, however medical records from the skeletal surveys taken on May 11th have still not been released to the parents or to their experts. The Ross family’s attorneys plan to ask for an extension, but there are no guarantees that the extension will be granted. If an agreement is not reached on August 6th, a permanency hearing will be held between the dates of September 23rd and September 25th.

Elected Public Officials Refuse To Help

Cynthia-Brandon-Ross

Cynthia and Brandon Ross. Photo supplied by family.

Cynthia has contacted several public officials, just to be told that they “do not get involved in court matters.” Paul LePage, however, sent her a handwritten note saying he would personally review the Ross family’s case file. She knows he did review the files, but she has not heard anything back from him or anyone else on the matter for quite some time. Cynthia said, “I ended up calling the governor’s office and Pat Condon, the constituent coordinator for Governor LePage, she told me that the governor cannot help me, he could not talk to me now or ever concerning this or any other matter.”

Brandon and Cynthia are hopeful that they can prove no abuse ever occurred and that they will have the opportunity to regain custody of both of their children. In a previous statement, Cynthia said:

“We’re just normal people who were concerned about our children.”

Source

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Coexistence of Ehlers-Danlos syndrome and multiple sclerosis- Term life

A 26-year-old male patient was admitted to our outpatient clinic with complaints of numbness and weakness in his left arm and leg. These complaints had started about 10 days ago and were continuing. From his personal history, it was found out that he had been followed up with the diagnosis of Ehlers-Danlos syndrome (EDS) hypermobile tip for 10 years, and that he had had low vision in his left eye lasting for 15 days, but he had not consulted a physician for this complaint.

After 1 year had passed from the complaint of blurred vision, he had had a plaques (Figure 2). His cervical MRI revealed several centrally-located, ovoid-shaped lesions aligned with C2-C3-C4 segments, which are consistent with demyelinating plaques. His thoracic MRI was considered to be normal. For the patient, who had blurred vision, a visual evoked potential (VEP) test was performed. p100 wave latency was lengthened for both VEP systems (right: 136, left: 132). Brainstem auditory evoked potential examination was normal. ANA, anti-dsDNA, Anti-cardiolipin IgG and IM, Homocysteine, Lupus Anticoagulant, Protein C, Protein S, Prothrombin II gene mutation, Factor 5 leiden mutation investigations revealed no significant pathologies. The patient was evaluated according to McDonald’s criteria, an acute multiple sclerosis (MS) episode was considered, and pulse steroid therapy was prescribed for 10 days. Following the treatment, his symptoms at admission were recovered. He is now being followed up by our outpatient clinic.

when a synthesis defect occurs in their synthesis.4,5 ECM proteins are produced by oligodendrocytes and astrocytes in the central nervous system, and were observed to be associated with the astroglial response in the MS lesions. According to a hypothesis, it can show effects on connective tissues and at the vascular level. Changes in the ECM proteins such as collagen and tenascin which are present in the blood vessel walls can cause myelin destruction by increasing the migration of the immune cells to the central nervous system. According to another hypothesis, MS-EDS association may be due to a suspicious gene. There may be a polygenic effect in MS, and one of these mutations may cause EDS. There are some points to be considered in the treatment of MS and EDS. These patients, who undergo physiotherapy due to MS, strong passive exercises can trigger pain or cause joint dislocations. Neck extension should be avoided to prevent carotid artery dissection.2

In our case, we discuss a rare association in terms of their underlying mechanisms and of the points to be considered in the treatment.

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fig 1

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fig 2

Conflict of Interests
The authors declare no conflict of interest in this
study.
Acknowledgments
We acknowledge our patients who have participated in the study.
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Foot-care in Ehlers-Danlos Syndrome- Advanced mold remediation

The foot in health

Even in health the foot is a very complicated structure. There are 26 bones, more than 30 small joints, and more than 100 muscles, tendons and ligaments that must all work together in order for the foot to function properly. The foot also has to cope with varying roles at different times in the walking cycle; needing to be mobile to absorb shock when landing but to be rigid and efficient when springing forward to the next step. The timing of these motions is also vitally important and there is plenty that can go wrong, especially where joints are more or less mobile than normal. The foot is exposed to very high stresses. During normal walking, the forces in the foot can be a third greater than when standing still and this can increase when running to result in forces equivalent to 3-4 times body weight. With more than a million steps to be taken per year, it is no surprise that mechanical aches and pains are common in the feet.

Unique features of the foot in EDS

While there is a good deal of accepted wisdom about the foot and its related problems in EDS it is fair to say that there is relatively little that is supported by good science. We think that in people with hypermobile joints some of the subtle timing mechanisms are altered and that this results in changes to the way that groups of joints work together. Many people with the hypermobile variants of EDS have low arched or flat feet but this finding is not universal and not yet fully understood. Paradoxically, in some people with a Marfan-type presentation the foot type can sometimes go the other way resulting in a high arched foot that is overly rigid.

Whether or not due specifically to changes in the joint mobility, we do know that problems with the internal function of the foot can increase the strain on the joints and the soft tissues (the muscles, tendons, ligaments) that hold everything together. As well as the direct consequences of altered joint function, there are a range of other features that can cause foot problems but which are secondary to the underlying problem. These include skin callus over exposed prominences, contractures of tendons (e.g. causing clawing of the toes), and problems with scar tissue.

While many of the above features have been noted but never measured formally, there are a few facts that have been established through scientific investigations. We know to begin with that ankle and foot hypermobility has been reported to affect as many as two- thirds or more of adults with the hypermobility types of EDS. We also know that compared with a control (healthy) population, people with hypermobile joints due to EDS or ‘benign’ hypermobility report:

•   Measurably poorer general health and quality of life

•   Worse lower limb pain

•   Greater lower limb disability

•   A tendency towards multiple joints being involved, with the lower limbs affected more than the upper limbs

Manifestations of EDS in the bones, joints and soft tissues

The most common conditions occurring in the bones, joints and soft tissues tend to be many of those that we see in the otherwise healthy population and are classed very loosely as ‘overuse’ type problems. In this context overuse does not mean doing too much activity overall, but rather overusing a specific tissue or a structure to the point that it becomes injured. The most common ‘overuse’ problems around the foot and ankle are damage to a tendon or its protecting sheath, ‘sprains and strains’ of muscles and ligaments around joints, and specific problems around the heel (most often plantar fasciitis). There is a rough rule of thumb used by many health professionals that people with hypermobile joints experience largely the same type of overuse type problems as their healthy counterparts but do so more frequently and more severely. This is a sweeping generalisation that has attracted some criticism but is nonetheless a useful way of understanding the types of foot problems that can be encountered by people with EDS.

Damage to a tendon or tendon sheath can be caused when the structures are over-stressed by a neighbouring part not performing properly. In the first instance the tendon sheath can become inflamed causing pain and stiffness. This can often be managed by taking mild anti-inflammatory tablets such as ibuprofen, or through home-based physical therapies (ice etc.) as described later. If the stress goes on for a long period the body of the tendon can become involved and this requires the intervention of a suitable health professional (see over). Modern imaging techniques such as diagnostic ultrasound allow us to look inside the tendons and have helped us understand and treat these conditions much better. Sprains and strains usually occur when a joint (or part of a limb) is moved rapidly to near the end of its stable range of movement. The mechanism is the same as for a sprain or a strain in an otherwise healthy person but these are a good example of where people with EDS can experience an injury more frequently or more severely than usual.

Finally, heel pain is so common that it warrants a special mention. The most common type of heel pain is the so-called plantar fasciitis, which is damage caused to the plantar fascia, a long fibrous band that helps maintain the foot’s long arch. There are other causes also but these are beyond the scope of this book. Plantar fasciitis/heel pain is usually felt as pain on the underside of the heel, typically worse when first standing in the morning or after a period of sitting during the day. Plantar fasciitis will resolve without treatment in many people, but for others it can persist for some years and be very resistant to treatment. In the early stages home-based remedies are worth trying but for resistant or long-standing heel pain a consultation with your GP, physiotherapist or podiatrist is required.

One common question we are asked is about bunions and clawed toes. A bunion is where the big toe twists out of normal alignment and is sometimes accompanied by the development of a lump at the base of the toe. Clawing of the toes is where the lesser toes bunch up due to the tendons tightening. Toe clawing is not hugely problematic in itself but can create hotspots of pressure on the tops of the toes or underneath the ball of the foot that can lead to discomfort. Both bunions and clawed toes are caused by problems with the internal mechanics of the foot combining with the deforming effects of shoes to create the forces that result in these changes becoming fixed.

Obviously over time, stresses and strains can build up to cause lasting damage to joints. People with hypermobile joints can find that the joints themselves can be uncomfortable but this is not necessarily a sign of permanent damage or arthritis. Where there is no lasting damage then exercise and orthoses can help protect the foot joints and these are discussed later. There is debate about the role of hypermobility in causing or even protecting joints from arthritis. There is some evidence that having extra joint mobility may actually reduce the risk of arthritis in joints such as the wrists and hands although the risk may be increased in other joints such as the knees. There is no good scientific data about the effect on foot joints. Arthritis can occur in any of the foot joints but the most common sites are: the ankle after one or more sprains, the base of the big toe as noted above, or less commonly in the joints of the middle of the foot. At present arthritic damage is not reversible and so the treatment options are limited. Some people will get relief from shoes, splints or orthoses that brace the affected joint, or from anti-inflammatory medication. Where there is frank arthritis however there will usually be some ongoing discomfort and while something ‘can always be done’ this may not result in the removal all of the symptoms entirely.

Common foot health problems

In a dedicated foot health service, nail care, callus reduction; footwear advice and provision; and orthoses/insole prescriptions are the mainstays of management. Podiatrists and chiropodists will also provide patients with advice to encourage and enable self-management of simple foot problems.

 

Nail problems

Abnormalities of the nails are frequently seen in clinical practice although there has been no specific study of these in patients with EDS. Difficulty with hand function coupled with painful upper and lower limb joints may also make it difficult for the patient to reach and cut the toenails. Inappropriate cutting of nails may lead to infection around the nail bed and ingrowing toenails, in such cases patients are advised to seek help from a private or NHS HPC registered chiropodist or podiatrist. We recommend that patients cut their nails straight across, filing afterwards and avoid cutting or digging down the sides of nails.

Verruca Pedis

Like other warts, verrucas/verrucae are caused by strains of papillomavirus, which many people carry on the surface of their skin. It does not cause any harm unless it penetrates into the skin, where it can cause a wart. This is most likely to happen if the surface of your skin is already damaged, with tiny cracks. Most people believe that verrucas are caught in the changing rooms of swimming pools and the pool surrounds, but only one scientific study has shown that people who use swimming pools regularly are more likely to get verrucas. Other studies have shown no link.

There are a variety of treatments available for verrucas, however the clinical evidence available for their effectiveness is very sparse and very often verrucas will disappear on their own. For patients with EDS, whose skin is particularly fragile we would recommend that they avoid acid based treatments and freezing techniques due to the risk of delayed healing and infection. Instead applying pure tea tree oil with lemon oil may be of benefit, however once again the evidence is poor.

Callus

The prevalence of painful callus (hard skin) in patients with EDS is unknown. Compressive and shearing forces acting on the skin can lead to corn and callus formation, and the presence of scarring from surgical interventions will also increase the chances of a person with EDS developing painful calluses. Calluses usually become problematic only when the callus becomes thick and limits skin elasticity and this is usually made worse if a corn develops in the centre of the callus. Regular treatment of the callus can be carried out by a chiropodist/podiatrist, but the callus can be expected to re-grow within one to six weeks, creating a need for ongoing care. Using emollients (moisturisers) to soften the skin and offloading of the area may be helpful in limiting callus regrowth. Offloading can be achieved through the use of foot orthoses (insoles) to redistribute forces or simple cushioning insoles in the shoes.

Fungal infections (Tinea Pedis)

Also known as athlete’s foot, this may be more common in patients with EDS who have significant forefoot deformities. Where the toes are deformed and very difficult to separate and dry thoroughly in between after showering/bathing or in particularly in warm weather then fungal infections may develop in this ideal warm, moist environment. Antifungal sprays are available from the chemist and these have proved useful. We recommend avoid using powders or creams in between the toes as they can build up and cause a reoccurrence of the infection. Prevention is always best and daily application of surgical spirit to the skin between the toes using cotton wool or buds can prevent the build up of moisture in the skin and is ideal in this situation.

Delayed healing

Impaired wound healing is a typical feature of EDS; this may be exacerbated with the weight bearing nature of the foot particularly if someone has a wound on the underside of their foot. If people with EDS have a wound the area may require offloading, for example with a surgical boot for a longer period of time to allow the area to fully heal. New scar tissue that forms subsequently will need to be treated with care, which includes protecting it from repeated trauma to the area (see below) and moisturising the area daily.

Self-management

In an era of increased patient empowerment, education programmes have become more commonplace. People can manage many foot conditions themselves with appropriate advice and support. Leaflets and online resources are increasingly available for a range of conditions and one-to-one advice is often available from the GP’s surgery or podiatry clinic. Where safe and appropriate, self-management and personal empowerment is known to result in better health.

Footwear

Sensible footwear choices are extremely important and simple changes here can make a significant difference to many people with hypermobility. Unstable ankles and overly flexible feet can benefit from greater control provided by the shoe, and the impact of overloaded joints and soft tissues can be offset to a significant degree through the judicious use of shock absorbing and cushioning materials. In essence, the characteristics of the ideal shoe are seen in the more solid types of trainers readily available in the high street. A strong heel counter for stability, a robust upper and strong fastening for midfoot control, combined with a cushioned midsole are all ideal. Many trainer-type shoes now come in colours easier to reconcile with the workplace and in settings where trainers are not appropriate; consideration of any of these features will likely to be helpful even when more conventional shoes are required.

Hosiery

Hosiery can be used to protect deformed joints and tissues (skin) at risk of breakdown as well as footwear. ‘Silipos’TM or other silicone-based products are available as socks or protective sleeves for areas such as the tops of toes, the ball of the foot and heel areas. They are easy to put on, reusable on a daily basis and can be washed. These provide additional protection for fragile areas or those areas that have recently healed following a wound, as well as providing cushioning for painful areas under increased pressure due to deformity. 

Hygiene

Limitations in joint movement for those patients who have developed arthritis with their EDS may cause difficulty in managing their own foot care needs including basic foot hygiene. Washing feet and changing of socks daily will help improve foot hygiene as well as moisturising areas of dry hard skin and using surgical spirit in between the toes.

Podiatry care

Foot orthoses
Foot orthoses are insoles worn in the shoes that are intended to limit excessive joint motions or to produce specific functional effects. They can be custom-made to a cast of the foot or can be provided ‘off-the-shelf’ or bought from pharmacies or sports shops. Some people with hypermobile foot or ankle joints will benefit from the functional control provided by foot orthoses although they not a panacea for all foot problems. The functional orthoses most widely recommended combine three key characteristics; a contoured shell, a heel cup and one or more wedges to influence joint positions. Standard foot orthoses can be obtained over the counter for between £20-£50 and may suit many people. More tailored devices may be required for significant instability or more complex problems and these are obtained through consultation with a health professional such as a podiatrist. These will usually have a deeper heel cup and more pronounced wedging. Customised devices can cost between £100-£500 and so it is worth checking firstly that the practitioner you are consulting is familiar with EDS and the subtleties of the problems that may be encountered and secondly it is worth discussing what the various alternative treatment options might be. Notwithstanding, it is essential that foot orthoses for people with EDS are provided in conjunction with other physical therapies (e.g. strengthening etc) as set out later. They may have little effect if used in isolation.
Braces

Ankle and rear foot braces are commonly provided for patients with EDS who are prone to dislocation, to limit excess movements, particularly excessive inversion and eversion (swinging in or swinging out of the heel when walking). Braces can be provided by your local orthotics or podiatry department following a referral from your GP, consultant rheumatologist, physiotherapist or OT. Braces are also available from sports shops, however it is unlikely that they will provide enough support for someone with EDS, particularly if the joints are very unstable or poorly aligned.

Braces, as with foot orthoses, should not be used in isolation. It is important that these external devices are used in conjunction with relevant strengthening exercises (see below), otherwise joints and soft tissue are likely to become even more unstable once the brace is removed.

Strengthening exercises

The benefits of improving joint stability generally are well recognised in the management of hypermobility of all causes. For the body ‘core’ many people find a Pilates-type approach helpful especially when combined with specific exercises. Foot exercises are of relatively limited use because of the large forces acting on the foot and the small size of most of the local muscles. Nevertheless, conditioning of muscles under natural loads may help somewhat as long as the exercises do not themselves cause undue discomfort. Barefoot walking is encouraged where safe and comfortable, and exercises involving repeated raising onto tip-toe may help strengthen the small muscles of the foot.

Stretching exercises

Many people do not think that stretching and hypermobile joints go together but there is an interesting paradox in that hypermobile joints may cause to excessive tightness of surrounding muscles and tendons in (over) compensation. Controlled stretching of the calf muscles, hamstrings and arch area may be useful if undertaken cautiously. If stretching causes pain or discomfort then the exercise should be performed or modified under the direction of a health professional familiar with the complexities of EDS. Potentially useful exercises are: stretching of the calf and arch muscles by leaning towards a wall with the feet on the floor, or through standing with only the front of the foot on small step and dropping the heels down. These stretches can be combined with non-weightbearing flexibility exercises (e.g. circling of feet, splaying of toes, picking up small objects with the toes).

Joint position sense

We know that joint position sense can be reduced in some people with hypermobile joints. The precise cause is not known but may arise because of looseness or damage to the joint capsule. Improving joint position sense may have a positive impact on instability in joints such as the ankle. Tiptoe standing is an easy way to (re) train the joint position sense starting with bearing weight on both feet simultaneously and raising onto tip toes for 5-6 repetitions of 30 seconds. If safe and appropriate this can be increased to more repetitions and ultimately to standing only on one leg at a time.

Surgery

Many people with problems in the bones, joints and muscles may be offered or may consider surgical treatments. While some surgical foot procedures (e.g. for removing bunions or fixing damaged tendons) may well be appropriate, there are a few specific things that people with EDS should bear in mind.

Many foot procedures are now conducted under local anaesthetic, which we know is sometimes less effective in people with EDS. Fragile skin can make it difficult for the surgeon to achieve a clean scar following surgery and even when the initial wound closes well, stitches can also pull later. This is particularly troublesome for structures such as the feet where the load causes the skin to stretch more than on other parts of the body. Depending on skin condition healing (and therefore the period off-weightbearing) may be extended by weeks after surgery.

Summary

The foot is very complex and so there is plenty that can go wrong in people with systemic conditions like EDS. There is evidence that people with EDS do get more foot problems than the rest of the population, but importantly many of these problems will respond very well to better footwear, or self-management programmes based on exercise and staged activities. Insoles can help stabilise foot joints but should be used in conjunction with exercises and changes to footwear etc.

If you do have foot problems that you think may be a direct consequence of your EDS you should consult your GP, hospital consultant or HPC registered podiatrist. They will be able to advise you on what you can safely do to help yourself and should be able to point you towards any extra treatments you might need. 

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