8 Tips for Patients Newly Diagnosed with Ehlers-Danlos Syndrome

By Ellen Lenox Smith

Ehlers-Danlos Syndrome (EDS) is a condition that causes one to be born with deformed connective tissue, the “glue” that holds the body together. At this time, there is still no cure to correct this problem, so living life with this condition means a accepting a certain level of chronic pain.

There are simple things to learn to live your life with EDS more safely. For instance,  learning how to properly strengthen the muscles that are on overload doing their job, along with that of the useless ligament and tendons. Or understanding how certain twists and turns bring on other slippage of the body.

Living with Ehlers-Danlos Syndrome means, at times, a long, lonely and difficult journey burdened with a constant search for direction on how to try to create something resembling   a normal life. I am 65, but it wasn’t until eleven years ago that I was finally given the correct diagnoses of something I was actually born with!

There have been times that I felt guilty for almost wishing I had been given a diagnosis of cancer — for then the doors of hope, direction, plans and medical interest would have been with me at all times. Instead, as many other EDS patients have learned, we cope with the unknown, judgment from friends and even family, isolation, confusion, and the lack of consistent knowledgeable  help.

All I ever wanted, when first diagnosed, was for someone to reach a hand out and guide me. That hand has never been there. So, instead, I have spent the past eleven years attempting  to help prevent others from having to replicate my experience. I simply wish to assist other EDS patients avoid some of the uncertainty and stress that I was forced to experience.

The task is often overwhelming and difficult, but you have no choice. This is the life you have been given.

With that in mind, I would like to make suggestions to the newly diagnosed, in hopes that your journey will begin safely by addressing these issues:

1) Confirm with a knowledgeable geneticist that you have EDS. If you get the feeling they do not understand or believe you have EDS, then go to another geneticist. I met with three before I was convinced and accepted the diagnosis.

2) Mourn your losses. It’s okay and necessary to allow yourself to mourn the loss of your past life — it will never again be exactly as you have known it. As you go through that process, remember you need to reach the goal of moving on.

3) Address pain control. Accept that you cannot take this journey on your own. You need to address your pain to have a chance of living as normal a life as you can. You might be like many of us and have trouble metabolizing certain medications. In that case, DNA drug sensitivity testing would help you to identify a compatible pain medication.

Many respond beautifully to medical marijuana instead of opiates. It can be taken in a simple dose of oil at night, that not only allows you to sleep but also carries pain relief to the body even into the next day.

4) Be evaluated by a neurologist for common EDS conditions such as tethered cord, Chiari I Malformation, and instability of the neck . This is a very important. Every patient should have this evaluation and have a neurologist monitor you. Many of us need to have the tethered cord released to end issues with the bladder, kidneys, pressure in the chest, and issues with legs. If you test positive, get it done and then you will feel so much better and be able to progress onto physical therapy more successfully.

Instability of the neck will cause havoc with your body if strengthening does not succeed. Chiari I Malformation must also be addressed. Any or all of these may be an issue for you in time, but please know that correcting them when the time is right will make the difference in moving forward again.

5) Find a good manual sacral physical therapist. This is your chance to take better control of your life by learning, through the guidance of a manual therapist. “Living Life to the Fullest With Ehlers-Danlos Syndrome” is a new book written by my therapist, Kevin Muldowney. He learned by taking on many EDS patients at his clinic, that there are safe ways to strengthen our muscles. I have been through the protocols and have found they work for me.

You’ll need to stay loyal to the daily workouts. But believe me, I love being proactive and so appreciate the good that is now showing — like having the sacrum hold!

6) Develop a network of doctors that understand EDS or are willing get educated.  Feel free to visit my website(ellenandstuartsmith.squarespace.com) to see if a doctor is listed near you. Also feel free to contact us if you have a good doctor that we can add to the list.

Remember, we are complicated and never get all better. That is a lot for a doctor to want to take on. Be patient and look for compatible personalities and let them learn through you.

7) Be sure to have a cardiologist.  You should have an echocardiogram (echo test) done yearly. The test uses sound waves to produce images of the heart and allows the cardiologist to see if your heart is beating and pumping blood correctly.

8) Determine drug and food allergies. I wish years ago I had a clue that there was testing out there to see why I had bad reactions to some medications and foods since birth. A simple DNA drug sensitivity test can help you find a safe drug to be able to put into your body. The same goes for food sensitivity testing. You will learn what foods are causing issues or what drugs are not metabolizing.

Both these issues are VERY important to address. If you keep taking medication or eating foods that are not compatible to your body, then you are adding to the inflammation in your system. More inflammation means more pain due to the increase of subluxations.

It’s also important to remember that you are not alone. Find a local EDS support group and learn as much as you can to live more safely with this condition.

Source: Painnewsnetwork.org

Raising a child with an invisible illness: Ehlers Danlos Syndrome

teen with invisible illness

LM is your typical pre-teen. She is silly, stroppy, giggly, shouty, loving, stubborn and very silly (seriously that needs to be there twice). First impressions most people would make is that she is small for her age, very slight in build, active, happy and healthy. And yes she is all of those things, but those first impressions are where the problem lies.

You see LM has an invisible illness and unless you have watched her joints popping in and out and bending in ways they really shouldn’t, or have lived through the endless nights filled with tears you’d never really know she was different to any other child her age.

LM has Ehlers Danlos Syndrome. There are many types of this syndrome, but she has the Hypermobility Type (formerly known as type 3). It is sometimes referred to as Hypermobility Syndrome, not to be confused with hypermobility or being “double jointed”.

LM’s invisible illness means that she is at risk of any and all of her joints dislocating or subluxing (moving out of place but not fully dislocated). Her wrist bones move apart by themselves and need clicking back together. She struggles to stand for long periods and gets dizzy every time she stands up. This is just a quick summary I will do another post to explain in more detail about growing up with Ehlers Danlos Syndrome soon.

It is great that LM looks so “normal” on the outside. She can fit in without having to explain herself if she doesn’t want to. When she is feeling good, being able to pretend there is nothing wrong is a wonderful thing for an almost teenage girl. But sometimes I wonder if having an obvious illness would make life easier for the rest of the world to understand what she goes through.

We have had many looks from strangers over the years when LM was carried on her dad’s back, because she couldn’t walk even one more step, even though her little brother was upset he couldn’t get a piggy back. I’ve had to defend the fact that for two years we needed to travel to Great Ormond Street Hospital because “if she was that bad she’d have a blue badge”. I have sat dumbfounded when a physiotherapist said that the only thing wrong with her was that she was too skinny and she should eat more biscuits and cakes to fatten up a bit. Seriously, this was AFTER her diagnosis!

In LM’s eyes, the worse thing ever to happen was at school and involved her footwear. She wears boots provided by the hospital but she’s only provided one pair at a time and the waiting time between appointments is ridiculous. She is often left without them for anything from a few weeks to a few months when she outgrows them. Finding supportive and comfortable footwear for those in between times is a nightmare and are never 100% suitable meaning she is at her worst physically and mentally. She’s had repeated comments about her footwear (even while actually wearing her boots), the worst coming from the headmaster himself who, in the middle of the busy dining hall, told her that he knew she was waiting for an appointment, but her trainers were unacceptable and we needed to go and buy more appropriate black school shoes.

She was absolutely devastated.

Okay, yes her trainers were white and pink and she had been wearing them for about two months but to pull her up on it in front of pretty much the whole school was totally inappropriate and unacceptable. I knew I couldn’t hold it together if I spoke to him in person so I wrote an extremely long winded and aggrieved letter explaining how upset she was, how much she would love with all her heart to wear normal school shoes. I even pointed out to him that if she had been in a wheel chair he would never have even considered approaching her about it.

I did get a phone call of apology, but not from the head teacher, and nothing has ever been said to LM. Although she has noticed that not a single comment has been made about her uniform since! Hopefully there won’t be any major issues through the rest of her schooling, even if people don’t understand the actual issues, just being understanding of her feelings will go a long way.

As for the future? My hope is that someday society will understand people like LM a little better and know that their pain and illnesses are not just in their heads.

I think we are a long way off from total acceptance of those with invisible illnesses. But maybe, just maybe, by the time she leaves school the world will be a more empathetic place and accept without question, that some days she can conquer the world, yet she won’t be able to lift her arm long enough to brush her hair the next.

Do you have a child with an invisible illness?

invisible illness

Source: Mami2five.com

What People With Ehlers-Danlos Syndrome and POTS Would Like to Hear – Life Insurance Program

Two young woman sitting in the park and talking about something.

By Mary Kay O’Malley

As a person with a rare chronic illness, there are times when I feel like I’m living apart from most other people in my life. Even my close friends, family, and co-workers are living day-to-day lives so different from mine. But then I remember, all of our lives are different.

There have been many times when someone manages just the right words to bridge the divide and every time it happens, it touches my heart! If you’re living on either side of that divide — as a person with a chronic illness or as someone who loves them — you’ve probably had the same experience.

Here are a few of my favorites:

1. “How are you…really?” Many people dealing with pain and illness on a chronic basis have learned to put on a mask of “fine-ness.” They say they’re fine or feel fine even when they don’t. We don’t mean to be dishonest, though. For me, it just means, “I’m hanging in there! Things are OK.”

But sometimes I just like to have an acknowledgement that I don’t look quite right or something seems off. One friend says she can see it in my eyes. Another can tell when I walk more gingerly or search for words. I don’t need them to question me every day, but I do appreciate it when they notice a bad day and care enough to ask.

2. “I looked up Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS) (or name your illness here) and I read about it.” The first time a friend said this to me, I was speechless! It never occurred to me anyone would take the time to look deeper into my disability. When someone says they care enough about my life to research my illness, I know they can see me as a whole person and they want to understand. A variation of this one was a time when I read an article on Pinterest about things to say to a friend with a chronic illness. I sent it to an empathetic friend to show her how much she had mastered all ten suggestions. When she replied she’d read the article months before and so she’d sort of “cheated,” I couldn’t have been more grateful. She had gone to the trouble of looking for my point of view.

3. The next one was a stunner. During a recent phone call with my brother, I was talking about a dislocation. His reaction? “What does that feel like?” It was tough to describe, but I tried! What a great question! All of a sudden it was clear to me how much he cared about me and about my experience with this specific pain. He’d gone beyond the idea of chronic illness and just reached in to understand how it actually felt to be inside this body. I made up my mind to try to remember to do that for other people, too.

4. Another personal favorite is being told to “Just do as much as you can.” In other words, your contribution matters, but it’s up to you to decide how you want to join. It’s hard to be told you don’t have to bring food to the potluck or clean up after the picnic, but it’s great to be given the freedom to determine how to be involved. I hear this all the time from a friend who happens to be my boss. When it’s a tough day or I feel like I’m not functioning at 100 percent, I can get really impatient with myself. She reminds me my best on that day is enough. That is a priceless gift.

5. Finally, from my experience, there are times when the best thing to say is nothing at all. There is a time for silence. Maybe I’d like to try to lift a bag of groceries you might think is too heavy. If it is, I’ll put it down or ask for help.

But if you tell me not to do it, you’re missing a try for independence I might really need. Friends will often offer to help, but sometimes I like to say no. It reminds me I’m capable.

Another time when I appreciate silence is if I’m having a hard time selecting the right words. The gift of silence allows me to find the words I want and to make my point in my own time. When a friend does that for me, I know my opinion matters to them. They think what I have to say is worth the wait!

Each of these conversations — and a hundred others — mean the world to me.

They give others a way to connect with me as an individual with value, opinions and a unique set of obstacles. It’s probably true that many people in my life have no idea how my rare chronic illness affects my days. I know there are people with whom I interact who have no idea about my EDS or POTS —and that makes me happy. Not everyone needs to know — just as I don’t know about the personal lives of everyone I meet. But I will work to be more like my friends who have had the wisdom to communicate these ideas and so many other empathetic thoughts. I, too, want to ask and say the things that will let them know I want to understand them better, too.

Source: TheMighty.com

29 People With Ehlers-Danlos Syndrome Explain What It Feels Like

By Elisabeth Brentano

Ehlers-Danlos syndrome (EDS) is a group of connective tissue gene disorders, and symptoms include skin that tears or bruises easily and unstable joints prone to frequent dislocations, among other issues.

EDS affects somewhere between 1 in 2,500 to 1 in 5,000 people in the United States, but understanding of the disorder tends to be limited among society and medical professionals. Some individuals with EDS remark that their doctors don’t even know how to spell it, and the most common analogy likens the body of someone with EDS to that of a house built with faulty materials.

“Our EDS community formed out of a need to understand ourselves even when medical professionals did not,” a spokesperson for the Ehlers-Danlos National Foundation told The Mighty. “Awareness about EDS leads to better lives. Although EDS is not curable, early diagnosis can limit long-term damage as problems can be treated as they arise, and sharing information in our communities about what has worked for each of us can help all of us.”

We teamed up with the Ehlers-Danlos National Foundation to ask their Facebook community how they would describe the disorder to someone who doesn’t have it.

Here’s what they had to say:

1. “It feels like I’m 80 when I’m 40.” —Kimberly A. Bates

A quote from Kimberly A. Bates that says, “It feels like I'm 80 when I'm 40."

2. “It feels like having the flu all the time.” —Linnie Lin

A quote from Linnie Lin that says, “It feels like having the flu all the time."

3. “I feel like an alien on a planet where I don’t belong.” —Yolanda Smith

4. “It feels like I’m slowly disintegrating into particles…” —Sarah-Marie Zeraphic-McFarlane

A quote from Sarah-Marie Zeraphic-McFarlane that says, “It feels like I'm slowly disintegrating into particles…”

5. “It feels like my body is falling apart at every joint.” —Breanna Griggs-Meloy

6. “It’s like a big pair of knickers with no elastic left.” —Christine Di Ciacca

A quote from Christine Di Ciacca that says, “It's like a big pair of knickers with no elastic left.”

7. “It’s like having the flu, a hangover and getting hit by a bus all at the same time.” —Irene Beck

8. “I feel like a marionette and someone else is in charge of the way I move.”Nicole Hess

A quote from Nicole Hess that says, “I feel like a marionette and someone else is in charge of the way I move.”

9. “It feels like your body is trying to turn itself inside-out, piece by piece.” —Aria Eragon

10. “It feels like I’m made of rubber bands that are about to snap.”Katie Thomson

A quote from Katie Thomson that says, “It feels like I'm made of rubber bands that are about to snap.”

11. “It feels like you’ve lifted a car off someone all day every day.”—Melissa Conder

12. “It’s like an old house, creaking, squeaking swaying, and popping in the night, the wooden walls and nails coming apart at the slightest breeze.”London Elaine Ridenour

13. “It’s like riding a bicycle with very loose bolts. You have to hold it together yourself or else it will fall apart.” —Melissa Drennan

A quote from Melissa Drennan that says, “It's like riding a bicycle with very loose bolts.”

14. “EDS is living the day after a car accident in perpetuity.” —Sabrina Winchester

A quote from Sabrina Winchester that says, “EDS is living the day after a car accident in perpetuity.”

15. “The pain is like sand paper being wiped on the inside of your skin all the time.” —Tiffani Rinzel

16. “You cannot trust your body to do what it is supposed to do.” —Emma Stathopoulos

A quote from Emma Stathopoulos that says, “You cannot trust your body to do what it is supposed to do.”

17. “It’s like trying to build a tower out of misshapen blocks, where the tower is your body and the blocks are faulty collagen.” —Courtney Simonds

18. “The hair on my skin hurts.” —Mary Carlson

A quote from Mary Carlson that says, “The hair on my skin hurts.”

19. “You feel like you are constantly disappointing people because you have to cancel plans at the last minute when you are in too much pain, too sick, or too depressed to leave your house.” —Lisa Allison

A quote from Lisa Allison that says, “You feel like you are constantly disappointing people because you have to cancel plans.”

20. “A 3 on a pain scale of 1-10 is a good day.” —Laurie Bohanan

21. “I feel like I’m falling apart at the seams.” —Lisa Sinnott

A quote from Lisa Sinnott that says, “I feel like I'm falling apart at the seams.”

22. “EDS is feeling ‘insane’ for years because people tell you there is nothing physically wrong when youknow there is.” —Sarah Elizabeth Erwin Bloom

23. “You have to deal with the idea that your body is basically falling apart and there’s nothing you can do to stop it.” —Erin Geerlof

24. “EDS is the hypochondriac’s disease — always being questioned about whether or not you’re really in pain, or if everything wrong with you is really connected or not.“ —Sage Schultz

25. “Dislocations are like walking on glass, not knowing when you’re going to get cut but you know it’s inevitably going to happen. It sparks an unnatural fear that is hard to live with.” —Ariel Amberg

A quote from Ariel Amberg that says, “Dislocations are like walking on glass.”

26. “The cruelest symptom of our illness is disbelief by medical personnel.” —Mary Carlson

A quote from Mary Carlson that says, “The cruelest symptom of our illness is disbelief by medical personnel.”

27. “It’s like falling down the up escalator indefinitely while bystanders speculate about how you got there, what your injuries might be, and if you really even look hurt.”Jess Elsen

A quote from Jess Elsen that says, “It's like falling down the up escalator indefinitely while bystanders speculate about how you got there, what your injuries might be, and if you really even look hurt.”

28. “It’s like having everything in your body short circuit.” —EmJ Jackle-Hugh

29. “Day to day I feel like a stretchy rubber doll that’s working hard to stand up straight; bad days feel like I’ve been hit by a car, but the good days make me feel like I can still conquer the world!” —Beverly Wilson

A quote from Beverly Wilson that says, "The good days make me feel like I can still conquer the world!”

Source: TheMighty.com

CANNABIS FOR THE TREATMENT OF EHLERS DANLOS SYNDROME-Drug rehab oregon

By Gooey Rabinski

Ehlers-Danlos Syndrome, or EDS, is a collection of genetic disorders affecting the connective tissue of the human body. It manifests itself in 10 major categories, ranging from classical and hypermobility (the most common varieties) to dermatosparaxis and vascular (which can be fatal).

The symptoms of this relatively unknown and inherited syndrome can be devastating due to the fact that the resulting degradation of connective tissues affects the skin, joints, bones, blood vessels, and many critical organs — including the heart.

It is estimated that roughly one in 5,000 people globally have some form of EDS. Of these, about one in 20,000 to 40,000 have the classical form, while one in 10,000 to 15,000 may have the most common hypermobility variant. Overall, there are nearly 1.5 million EDS sufferers worldwide.

The most severe form of this syndrome, called vascular EDS, causes the walls of blood vessels to rupture. It may also result in rupturing and hemorrhaging of the intestines, uterus, or other organs.

EDS is the result of genetic defects in the production of collagen and always results in chronic pain for sufferers. Unfortunately, EDS also produces a perpetual fear among patients that they will dislocate a joint or otherwise damage bone sockets. This results in sometimes extreme anxiety and mobility challenges. Some EDS patients,  many of whom are young women, are relegated to wheelchairs or can walk only with canes.

EDS Symptoms

The symptoms of EDS are far wider ranging than in most diseases, conditions, or syndromes. Because connective tissue affects such a large portion of the human body, symptoms include unusually soft or elastic skin, irregular heartbeat, hypermobility (fingers and limbs that extend or bend much further than is normal), fainting spells (often due to a weak heart or orthostatic intolerance), and a number of other issues.

“Everything will bend backward and pop out of place without my rings,”

said Kristin Means, an EDS patient advocate and lecturer

cannabis ehlers danlos syndromeKristin Means showing the rings and braces that prevent her joints from bending backwards and popping out of place.

Means wears what many misinterpret as stylish rings that wrap back around her hands and wrists. However, instead of the latest fashion trend from Manhattan, Means’ “rings” are actually splints that help  prevent the dislocation and overextension of her fingers and hands.

EDS affects skin, muscles, tendons, and cartilage. In fact, it damages anything in the human body involving collagen. This syndrome can manifest as such a wide set of symptoms because of the various things that can go wrong in the human body when the connective tissue in the joints, skin, and vascular system become weak or defective.

Numbness in the extremities, unusual flexibility of the joints, and circulation issues (many EDS patients become cold very easily) often haunt sufferers of this syndrome. EDS can also result in issues such as cervical slips, tethered spinal cords, overcrowding of teeth, and chronic joint pain. A kink of the brain stem may result in severe headaches and stomach aches.

Said one EDS patient, “Every person presents differently.”

Because connective tissue and ligaments are so weak in EDS patients, the surrounding tissue must work that much harder to maintain mobility and body posture. This is what leads to such powerful chronic fatigue in most EDS sufferers. This fatigue, in turn, causes some patients to sleep for long periods, such as 12 or 13 hours at a time.

cannabis for edsKristin Means demonstrating elastic skin caused by EDS.

EDS can also result in irregular heartbeat and stress on the heart. In severe cases, this can produce sudden cardiac arrest and death. Even minor injuries accumulate and don’t heal properly. Bumps, bruises, and dislocations arecumulative — something that is difficult for non-sufferers to fully understand.

Many other conditions (more than can be covered in this article) can result from the problems of EDS. Examples include early onset arthritis, osteoporosis, and an inability to stand for more than a few minutes. In extreme cases, patients simply cannot stand unassisted and require a cane or wheelchair for mobility.

Bruising and Dislocations

Two of the most common results of most varieties of EDS are extremely easy bruising and dislocations of joints. As readers have learned, many patients, especially those with the hypermobility class of this syndrome, must wear special braces to prevent their fingers, hands, feet, and legs from extreme bending and becoming dislocated.

This can also result in weakness in the spinal cord and skull, which can produce injury to the brain and central nervous system. Often, this damage is so severe that it requires dangerous invasive surgery.

Said one EDS patient in the United  States, Ramona Rinne, in a YouTube video:

“My body is always covered in bruises. Especially on my legs. I can go to sleep one night, completely bruise-free, and then wake up the next morning and I have bruises all over my legs.”

She continued, “It looks like someone beat me in my sleep.”

Many EDS patients lament the fact that their condition is so severe that they are unable to hold a job or pursue an active career. Said Rinne, who was 24 when she produced her video: “It sucks being this young and knowing you’re never really going to work,” she said. “That’s something that I think most young people take for granted. They take going to school for granted and they take getting jobs for granted and having the energy to volunteer.”

“I spent years in school training to be a lawyer before my diagnosis,” said Alison Gary, a 31-year-old with the hypermobility type of EDS.

“I was able to practice law for only a year before I had to stop working due to health problems,”

said Gary in an exclusive interview with Whaxy.

“Now I have school debt and do not know if I will ever be able to hold a full-time job, let alone practice law again. I wish I had known about my EDS sooner,” she continued.

cannabis for ehlers danlos syndromeAlison Gary suffers from hypermobility EDS, and uses cannabis to treat symptoms.

Misdiagnosis

Ehlers-Danlos can manifest itself as many conditions and other diseases; this is why it is a syndrome, not itself a disease. Because EDS patients often havearthritis, fibromyalgia, lupus, and depression, physicians unfamiliar with it or lacking experience with such patients may misdiagnose Ehlers-Danlos as one of these (when the misdiagnosed condition is actually only one manifestation of the syndrome).

EDS patients are routinely misdiagnosed with a number of diseases or other conditions. These include chronic fatigue, multiple sclerosis, hypochondria, growing pains in children, child abuse (easy bruising), anxiety, benign joint hypermobility, irritable bowel syndrome and substance dependence.

Uninformed doctors who continually tell EDS patients in pain that they are hypochondriacs are especially taxing. The reasons for this lack of diagnostic accuracy in the medical community are complicated and many. However, it is caused primarily by the fact that EDS manifests itself in such a wide number of ways.

In fact, one EDS sufferer can exhibit an almost totally different set of symptoms than another. It is theorized that many ambiguously classified cases of fibromyalgia may, in fact, be EDS that has simply been misdiagnosed.

“There are so many people in the EDS community diagnosed with both EDS and fibromyalgia. While I believe you can have both, I wonder if many received their fibro diagnosis before their EDS, as an EDS misdiagnosis,”

said Gary.

Many EDS support groups and advocacy organizations push the issue of patient integrity and support for those who may not agree with the diagnosis of a physician.

“Regardless of whether you think you have EDS or any other disease, you are your best advocate and only you know your body,” writes EDS advocacy organization Princess and the Pea Group on its website. The organization encourages those who believe they may have EDS to question their doctors if they feel they are being misdiagnosed. “Trust in yourself and fight for what you think is right. Get second or third opinions if necessary and never give up.”

medical marijuana ehlers danlos syndrome

How Does Cannabis Help?

Cannabis and its constituent cannabinoids, like THC and CBD, react withcannabinoid receptors located throughout the human brain and body to provide three primary efficacies:

  • Analgesia (pain relief)
  • Inflammation reduction
  • Anti-nausea

Because all EDS patients suffer chronic pain, and many are victims to bruising and other forms of inflammation (including that of the brain), cannabis is especially helpful.

Many EDS patients also suffer stomach pain and nausea, meaning that cannabis is uniquely qualified to treat this set of symptoms.

“EDS presents wide-ranging symptoms. These are traditionally treated with a different drug for each symptom — muscle spasms, pain, inflammation, nausea, depression, poor sleep…”

said Gary

Gary, who relocated to Oregon to gain safe access to cannabis, believes that cannabis helps all of her symptoms to provide holistic relief. She is happy that she can replace or supplement many traditional drug therapies.

“I credit cannabis with providing a higher quality of life than I had before I had access to it. I wish all EDS patients were able to see if cannabis could help them.”

Depending on the symptoms to be treated, cannabis can be consumed using avariety of methods which include smoking dried flowers, vaporizing potentconcentrates, eating edibles, or sublingual tinctures and sprays. Cannabinoid therapies have advanced significantly in the last decade, and as a result many products can provide symptom relief without the cerebral euphoria known as being high.

*Alison Gary also reviews cannabis strains for Whaxy. Click here to check out her in-depth review of Death Star that includes a full terpene profile analysis.

Source

To the Mom of the Child With Sensory Processing Disorder- Term life

I’ve learned to follow my gut instinct over the last five years and it’s never failed me yet. Over the last 15 months, my gut has been telling me that my 4-year-old may not be as high-maintenance as I thought, and that it runs a lot deeper than just being a sensitive soul. Maybe my gut has been telling me a lot longer than that, but I was in denial.

That’s the thing about the term “special needs” – you’re accepting of everybody else’s children under that definition, but it can be harder when it’s your own children. It’s hard to accept that life is never going to be “normal” by society’s standards. It’s hard to embrace it.

I admit I struggled when I realized my child may have sensory processing disorder (SPD) and some autistic traits. My child? No, not my child; yet he ticked every box! Things started to make sense. He wasn’t just sensitive, he was overloaded and couldn’t cope. They weren’t tantrums 40 times a day, they were meltdowns from sensory overload. He wasn’t sniffing everything just because. He wasn’t repeating everything to be rude, it was echolalia. He wasn’t being awkward about his clothes being just right. He wasn’t being naughty when he had a screaming fit because plans changed. He wasn’t being silly about refusing his nails being cut. He wasn’t just sensitive when smells made him cry. He was overloaded. His senses are literally in control (or out of control) of his every thought. This breaks my heart. I can’t fix it. His momma can’t fix it.

How as a momma did I not know something was wrong? I’d have done things so differently. I would’ve been more patient. I wouldn’t have made him have time-out for every meltdown that occurred. I wouldn’t have yelled when he wouldn’t try a new recipe. I wouldn’t tell him he was rude when he wouldn’t acknowledge people or say goodbye. I could kick myself now looking back. How did I not know?! But life is too short for regrets.

I was in denial for a long time. I was grieving the life I thought I’d lost, but I was wrong. Nothing has changed, except my knowledge and recognition. This is the life we have, my boy has. He’s not defined by a label. His brain may be wired a little differently to the average person, but that doesn’t make him weird or less of a person. As soon as I accepted that, we were able to approach things differently.

I think when our children are diagnosed with disorders we, as parents, are often so worried about the stigma attached to those disorders that we’re the ones with the actual problem. We fret so much about what others think that we often do more harm than good. We have to accept the circumstances ourselves, and once we do, nothing will hinder our perception of the disorders.

After researching SPD, I understood more and more about the challenges my boy was facing, and I became prouder by the second for his accomplishments. Daily life is overwhelming for him sometimes, but he tries so hard. Even simple tasks such as getting dressed are big accomplishments. I find myself begging the Sock God to be kind and not make the seams irritating today; I hold my breath when labels meet skin. The thought of asking to trim his nails sends shudders down my spine. I’m constantly holding my breath waiting for the next reaction armed with calming words and cuddles.

I try to be as patient as possible. That is a key factor with SPD. Anxiety levels are already on the edge daily, and an impatient momma will not help. I’d like to say I’ve perfected this, but that would be lying. Some days I yell. Some days I cry. Some days I feel mentally exhausted. Some days I feel like a crap mom.

Not a second goes by that I’m not planning the next moves around the sensory needs of my child. It’s a never ending job and my mission is to avoid meltdowns at all costs. Sometimes that means staying home all day, or spending days speaking about upcoming plans, or swapping housework for an afternoon of cuddles. I’m never, ever too busy for cuddles.Sometimes it even means joining him under the table to eat at a party when he’s overwhelmed with all the people.

I fret about going to the mall, to parties, to people’s houses, to new places, but it never stops me from going. I don’t want my boy growing up feeling ashamed or lonely. I want him to know it’s OK to feel how he does and that people understand. I want to teach him healthy strategies to cope with his issues.

I want the best for him. And the best is not me denying there’s an issue. The best is not me wallowing in self-pity and feeling sorry for him and his future. The best is instilling self-worth in him every single day. I need to remember he’s highly sensitive to the world around him, and that even on calm days, he probably feels like a tornado has just buzzed around him.

There are some things that I can’t stand, one of those being veins. Even the word makes me cringe. If I see veins or hear someone talking about them, I feel sick and weird. My boy sees and hears veins every minute of his life, except it’s not veins, it’s smells, noises, textures, crowds and bright lights. This keeps things in perspective.

SPD might wear you out as a momma, but imagine how much more it wears out the child who has it? Momma, your tears won’t change the future, but your perception of SPD will.More patience, more cuddles and less apologies to the public will help. You don’t have to justify anything to anybody, and if people question the diagnosis, let them. Some disabilities are unseen. Momma knows best.

I hope sharing a little of our world helps in some way. It can be a lonely road, but I’m right there cheering you on.

Keep going. Tougher days might be ahead, but plod on through the tears, the meltdowns, the aggression, the misconceptions and the brick walls – your kid needs you.

Source

Coping with pain from Ehlers-Danlos Syndrome- Drug rehab center

You might have seen Hallie’s edition of Tell Me a Story. Her journey with pain as a patient with Ehlers-Danlos Syndrome (EDS) is familiar to us now, but several years ago, we had not recognized just how often EDS, a hereditary cause of hypermobility, was a cause of pain.  In fact, I recall reading a journal article in the 1990s that said hypermobility was not a cause of pain.

But it is. We’ve learned a lot since then.   Several years ago we began to notice that patients came to our Pain Clinicwith a variety of different pains. We listened as they told their stories and noticed that many of them were hypermobile, or “bendy.” We started to see a connection: pain was associated with EDS way more than we ever knew.  It was starting early with these patients, sometimes before adolescence, and really seemed to pick up once a person goes through the hormonal and physical changes of puberty.

While the specific pain can vary from person to person, we have determined some patterns.  Here are the kinds of pain that someone with EDS might feel:

  1. Pain in the joints. Any of the joints can hurt, and often more than one does.
  2. Pain in the back
  3. Pain in the abdomen
  4. Frequent headaches
  5. Pain with daily tasks. People with EDS can have trouble using pens and pencils, because holding tightly to something so thin becomes painful.
  6. Dislocation of joints. Participating in sports or aggressive activities can sometimes lead to a dislocation injury.
  7. Pain all over. Fibromyalgia and Complex Regional Pain Syndrome, a type of severe localized pain, are common symptoms in patients with EDS.

With all of the above symptoms of pain, how does someone with EDS get relief?  We have found several effective treatments for pain relief, but physical therapy (PT) is the most important intervention. The right kind of PT emphasizes “proprioception,” which is the sense of where one’s joints are in space. Patients with EDS lose some of the sense of where their joints should be, which causes misalignment.  And this is a large factor in their pain. Aquatic therapy can be another great way to go, if PT on land is too hard to start with.

Here are other ways we have found to relieve pain associated with Ehlers-Danlos Syndrome:

  1. Work with a pain psychologist. He or she can provide excellent interventions for chronic pain. The idea is to harness the brain to help control the pain and to figure out ways to have a good life in spite of pain. This is extremely important.
  2. Acupuncture can be helpful for some people.
  3. Meditation and gentler martial arts such as Tai Chi can sometimes combine the strength of the mind and the body to bring some relief.
  4. Yoga is often used as a good mind-body therapy. But be cautious. For people with EDS, speak with the instructor and watch a class or two to see if the positions used are okay for your joints.
  5. Medications can help, but cannot change the joints, only lessen the symptoms.  No medication can take the place of proper PT, OT, and psychological therapies:
    1. A fast acting, short-lasting pain medication can be helpful during a painful dislocation.
    2. A muscle relaxant to help reduce muscle spasm after a dislocation can help get the joint back into position.
    3. Some anti-seizure and antidepressants can help with widespread pain, or nerve-related pain

Many patients with EDS come to us feeling resigned to their pain.  They have had it for so long that they feel like it is something they just have to live with. But the reality is that we have found quite a few methodologies that can offer relief. They may not offer 100% reduction in pain, but these treatment approaches help patients get back to their daily lives and tasks. We’re thankful for our patients who have taught us so much along the way.  In turn, we are happy to help other doctors, therapists, and patients with EDS learn more. Be well.

Source

Mother who dislocates her joints 20 times a week now fears her three children has same crippling condition- Term life

Mother who dislocates her joints 20 times a week now fears her three children has same crippling condition… allowing them to bend their limbs into eye-watering positions

  • Sarah Wells has Ehler Danlos Syndrome – her connective tissue is weak
  • 38-year-old has dislocated her joints hundreds of times doing menial tasks
  • Has been forced to quit her job as a nursery teacher due to the condition
  • Believes her 3 children have the condition as they are extremely bendy

A mother who endures the pain of her joints dislocating up to 20 times a week now fears her three children suffer the same crippling condition.

Sarah Wells was diagnosed with Ehler Danlos Syndrome (EDS) two years ago.

The 38-year-old has suffered dislocated joints all her life, and has even popped her wrist out of place lifting a kettle full of water.

Mrs Wells’ EDS means that the connective tissue in her body, which support the skin, tendons, ligaments, blood vessels, organs and bones is weaker than usual.

This means it cannot support the body to do even the most menial of tasks – meaning her bones can dislocate dozens of times a week.

And now, she believes her children, Alfie, 11, Charlie, 8, and Rubie, 5, are all suffering with the same condition – after they regularly manage to twist their limbs into eye-watering positions.

Mrs Wells' children are all extremely hypermobile and can bend their bodies into eye-watering positions Mrs Wells' children are all extremely hypermobile and can bend their bodies into eye-watering positions. She believes this is an indicator of EDS. Rubie is pictured extending her joints'The doctors made me feel like I was making it up and I want it to be different for my children,' Mrs Wells said, adding that she wants to help them as much as possible as the condition progressesRubie, pictured, is so hypermobile she has recently been referred for a wheelchair

Mrs Wells, from Hillingdon, London, said: ‘I must have dislocated my knee hundreds of times in my 20s, which limits me being able to run about with the kids.

‘But unless I have dislocated a joint and have it strapped up, people can’t really see it so they don’t believe it’s real.

‘There was a time when I dislocated my knee walking into a nightclub with my friends. The bouncer didn’t understand and tried to stop me coming in because he thought I was too drunk.

‘Eventually I strapped up my knee and then went to have a drink. I just got on with it.

‘I don’t tend to pick the kids up as my wrists can’t take it.

‘I don’t have a kettle at home anymore as I can’t lift it when it’s full of water. It puts my wrists out of joint.

Mrs Wells carries out a daily physiotherapy session with her family in order to help strengthen their bodies

RARE CONNECTIVE TISSUE ILLNESS

Ehlers-Danlos Syndrome (EDS) is a collection of inherited conditions, known as heritable disorders of connective tissue.

Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

There are different types of EDS, which can cause:

  • joint hypermobility – increased range of movement of the joints
  • loose, unstable joints that are prone to dislocation
  • joint pain and fatigue
  • joints that ‘click’ and are easily bruised
  • stretchy skin
  • fragile skin tissue

The fragile skin and unstable joints may be the result of faulty collagen.

Collagen is a protein in connective tissue that acts as a ‘glue’ in the body, adding strength and elasticity.

The different types of EDS are caused by alterations in certain genes that make collagen weaker.

In some cases the amount of collagen in the body is reduced.

The faulty genes can be passed from parents to their children.

Source: NHS Choices

‘I can’t write for more than half a page because it causes my thumb to dislocate. There was an occasion recently where I couldn’t sign my own name.

‘My condition doesn’t limit my life span but it does get worse as I get older.’

During her twenties Mrs Wells’ chalked up hundreds of injuries as her knees would dislocate doing normal activities.

Mrs Wells, who worked as a nursery teacher before her condition forced her to quit her job, said: ‘For years, the doctors would not believe my symptoms and in the end I was made to feel as if I was making everything up.

‘The number of misdiagnoses I have had is ridiculous.

‘Doctors have diagnosed me with everything ranging from glandular fever, to strokes and heart attacks.

‘At one point, I was sent to hospital by my GP as they thought I was having a heart attack.

‘When the doctors realised it wasn’t they then thought I had had a pulmonary embolism.

‘After I had children, my health went into a downward spiral. I was a teacher before my health went downhill, but I don’t work anymore.

‘When I was working I could come home and sleep in the afternoon, but once other people depended on me I couldn’t.

She was diagnosed with Charcot-Marie-Tooth disease (CMT), an umbrella term for a group of inherited conditions that damage the peripheral nerves, when she was younger – but knew this didn’t explain all of her symptoms.

Now, she sees her own children suffering the same symptoms she had and believes they are also suffering from EDS.

Her eldest son, Alfie, has already been diagnosed with a connective tissue disorder and her daughter has been diagnosed with CMT.

‘The doctors made me feel like I was making it up and I want it to be different for my children,’ she said.

I don’t have a kettle at home anymore as I can’t lift it when it’s full of water. It puts my wrists out of joint
Sarah Wells, 38

‘Over the past six months we have been to hospital with the kids more than 20 times.

‘But I have taught them to be positive and always see the glass as half full.

‘The amount of time and money that we have to spend getting to appointments in different places really mounts up.

‘Rubie is very hypermobile and was referred for a wheelchair recently.

‘Because she is so positive, she is looking at it in a good light. But it will upset me to see her in that position.

‘Charlie, my middle child, is also very bendy.

‘I know that I have to help my kids so every day we have a family physiotherapy session where we’ll stretch and do exercises that will help their bodies.’

Source

Getting Disability Benefits for Ehlers-Danlos Syndrome- Term life

If you have vascular or regular EDS with severe symptoms that prevent you from working, you may be able to get disability.

Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the connective tissues in your body, which serve to provide strength and elasticity to your body structure. Ehlers-Danlos can affect your skin, joints, and blood vessel walls; the syndrome is characterized by extremely flexible joints and very stretchy, fragile skin. Vascular Ehlers-Danlos syndrome is a severe form of the syndrome and affects the blood vessels in the body.

If you have EDS and are unable to work because of severe symptoms from it, you may be eligible for disability benefits, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

Symptoms of Ehlers-Danlos Syndrome

Those with Ehlers-Danlos syndrome generally suffer symptoms associated with their joints, due to increased flexibility. These symptoms can include:

  • joint dislocation
  • joint pain, and
  • double- jointedness.

Skin symptoms are also common, due to the increased stretchiness of the skin, and can include:

  • easily bruised or damaged skinned
  • poor wound healing, and
  • increased scarring.

Other symptoms caused by EDS due to the connective tissue impairments include:

  • back pain
  • flat feet
  • vision problems, and
  • fatty growths, generally around the knees or elbows.

Long-term effects of EDS can include:

  • chronic joint pain
  • early onset arthritis
  • failure of surgical wounds to heal properly
  • increased skin infections due to improper healing
  • premature rupture of membranes during pregnancy, and
  • rupturing of the eyeball.

Symptoms of Vascular Ehlers-Danlos

Vascular EDS has separate symptoms and long term-effects. Those with vascular EDS have distinct facial features, including thin noses, thin upper lips, small earlobes, and prominent eyes. Their skin is also noticeably thin; blood vessels will be very noticeable on pale people who suffer from vascular EDS. This type of EDS can weaken arteries throughout the body, especially the aorta (which is the largest artery in the heart) and arteries in the kidneys and spleen. The walls of hollow organs, such as the uterus and intestines, can also be weakened.

The long-term effects of vascular EDS can be extremely severe and can lead to sudden death from blood loss in extreme cases. Some of possible complications include:

  • rupturing of a major artery, such as the aorta
  • rupturing of arteries in the organs, and
  • rupturing of the intestines or uterus.

Qualifying for Disability Benefits for Ehlers-Danlos

There are two ways that individuals can qualify for disability benefits: meeting a disability listing or proving you are unable to work.

Meeting a Disability Listing

To meet a listing, you must show that you have an impairment listed in the Social Security “Blue Book” and that you meet all of the requirements noted in that listing.

For those with EDS, there is not a specific listing. Rather, you can meet a listing for an impairment you have due to the syndrome. Below are some of the possible listings that may be meet by EDS sufferers.

  • Listing 1.02 – Major dysfunction of a joint (due to any cause)
  • Listing 2.02 / 2.04 – Vision loss
  • Listing 4.10 – Aneurysm of the aorta
  • Listing 5.02 – Gastrointestinal bleeding requiring a blood transfusion, and
  • Listing 8.04 – Chronic infections of the skin.

Please note that while the listings for arthritic and connective tissue disease under Immune System (Listing 14.00) appear to be applicable to EDS, Social Security has clarified that they do not apply to EDS because EDS is a genetic disorder, not an immune system disorder.

Unable to Work

If your symptoms don’t fit into any of the above listings, you may be able to get disability benefits if your symptoms are so severe that they prevent you from being able to do most work activities. To receive disability benefits based on an inability to work, Social Security will look at your physical, mental, and sensory limitations. Those who have EDS often suffer from both physical and sensory impairments due to the syndrome.

Physical Abilities

Physical abilities include exertional activities, such as moving or lifting items and walking or standing for periods of time. Non-exertional physical activities include the ability to sit for periods of time or to complete office work such as typing or filing and will also be considered when determining physical abilities.

For those with EDS, joint problems can affect both gross motor skills (such as walking and using your arms) and fine motor skills (such as typing or doing other work with your hands), depending on what joints are affected. Chronic pain in the joints could also affect their ability to do physical work.

Sensory Abilities

Sensory abilities include your ability to function within various work environments and to adapt to situations. For example, vision loss can affect your ability to adapt to new environments, would limit the type of work that you could perform, and can limit the locations where you can work. Additionally, if open wounds are present, the environment in which you are able to work may be limited.

Social Security’s Decision

Social Security will develop a residual functional capacity (RFC) report on you that includes your physical and sensory limitations and will compare it to the requirements of your past job as well as other work to see if there is any work within your limitations. Social Security look at these factors plus your age, education level, and work history in determining if you are able to work.

Source

EDS:The brave 23-year-old with the body of a pensioner- Term life

Seanin Smith is facing a TWO-WEEK trip to get treatment in Maryland for the rare condition she’s been fighting since 2013

Stunning Séanín Smith may be just 23, but she has suffered more health problems than many people do in a lifetime.

The Co Armagh woman was diagnosed with a condition called Ehlers Danlos Syndrome (EDS) in 2013.

Séanín has since been hospitalised countless times after suffering multiple strokes.

She has had to learn how to walk again four times and now uses a zimmer frame because of the crippling condition.

The progressive incurable disease affects the skin, joints and muscles causing frequent seizures as well as affecting vital organs.

But the inspirational young woman from Belleeks has not let it stand in her way and graduated from the University of Ulster with a Bachelor’s degree in Nutrition.

 

She has also enrolled in a Masters which she is keen to complete when she is well.

Speaking to Belfast Live, Séanín described “everyday as a battle through the ongoing pain”.

“Every morning I get up restless due to late nights as I know I will not be able to sleep with my pain,” Séanín added.

“After breakfast I could sit at the table for hours from the pain of eating or from migraines or dizziness.

“It could take me hours to get myself washed and dressed just to go and sit on the sofa.”


Seanin has suffered multiple strokes over the past few years

The rare occasion that Séanín gets out of the house normally revolves around hospital appointments, which proves incredibly difficult for her.

Séanín said: “A typical day at the hospital means loading up the car with oxygen tanks, my wheelchair and my zimmer frame. My mum also prepares a lunch as I cannot eat out due to my special diet.

“Even a small trip to my local GP’s is tiring and time consuming, wearing my uncomfortable neck brace to support my head and lying down flat in the car.”

As the condition grips Séanín, her family continue to raise awareness of the illness and much needed funds for treatment which can only be carried out in America.

The “Fight On” Campaign on Facebook was set up three years ago by her family and has garnered huge support across the country.

Her sister, Louise, told Belfast Live that the family had initially thought Séanín could receive treatment in London however a leading neurosurgeon advised them her condition is too complex and she will need to travel to America.

 

Louise added: “Séanín has lost an inch in height as her skull has sunk downward onto her spine over the last few months.

“Due to this, her other health problems have dramatically worsened and she has had a very difficult time so this surgery in America will hopefully alleviate some pain for her.”

However, getting to America poses another problem as the young student cannot fly so she will spend two weeks travelling to the States with her parents for the surgery.

Séanín will get the boat to Southhampton where she will spend a few days and from there she will sail to New York.

From New York the family will have to make their way to Maryland which is another four-hour drive away.

In Maryland an expert Professor in Séanín’s condition will carry out extensive tests ahead of surgery.

Louise, along with the rest of the Smith family, welcome any new members to the Fight On campaign to help with fundraising efforts.

She urged: “If anyone can help in anyway with upcoming fundraising or can give us new and exciting ideas, please get in touch.”

Source