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

Swimmer Kathleen Baker Overcomes Crohn’s Disease to Become an Olympian

Kathleen Baker after qualifying for the Olympics by finishing second in the women’s 100-meter backstroke at the United States trials last month. CreditDoug Mills/The New York Times

OMAHA — Kathleen Baker stared at the seemingly simple question on the form distributed to members of the United States Olympic swim team. What challenges did she have to overcome on her way to qualifying for the Rio de Janeiro Games?

For Baker, one of about 700,000 Americans who have Crohn’s disease, the answer could fill a 70-page spiral notebook, and it is not as easy as WebMD. How does one begin to explain the physical and psychosocial challenges of living with a disease — a chronic, recalcitrant gastrointestinal inflammation — that can be embarrassing to talk about? How could she describe the medications that can lose their efficacy over time, or a fatigue so fathomless it can sap your will?

Baker, 19, has fought to prevent her health challenges from defining her. Talking for the first time about her condition, she said: “I found doctors who weren’t going to be just like, ‘You’re Kathleen with Crohn’s disease.’ I need to be Kathleen the swimmer with Crohn’s disease.”

Baker, who qualified for the Olympics in the backstroke — and perhaps a relay — seven years after receiving the life-altering diagnosis, will not be the first American Olympian with Crohn’s. The kayaker Carrie Johnson, now retired, made the first of three Olympic teams in 2004, a year after she was found to have the disease. Other prominent athletes who have the condition include the N.F.L. quarterback David Garrard, who had a foot of his intestines removed, and the former N.H.L. player Kevin Dineen, who played 16 seasons after learning he had Crohn’s.

Michael Kappelman, a pediatric gastroenterologist at the University of North Carolina who has treated Baker since she was 15, said his patients’ goals typically revolve around making sure the disease does not derail their dreams of going to college, getting married, having children or pursuing a career.

But going to the Olympics? When he started treating Baker, Kappelman said, he was not at all sure that was realistic.

Baker, who was born and raised in Winston-Salem, N.C., can remember clearly when she started feeling poorly. It was February 2010, the same weekend she set her first two national age-group records, shortly before her 13th birthday. She complained of fatigue and was running a fever. When lab tests came back inconclusive, her pediatrician, Barbara Clifford, referred her to a gastroenterologist for a colonoscopy. It was Baker’s first; since then she has had more than half a dozen.

 Baker in eighth grade, when her medical issues caused her to lose more than 10 pounds off her already thin frame. CreditKimberley Baker

“This is so bad, one of the worst stories ever,” she said. “I was on his email and an email popped up from my pediatrician saying the diagnosis.”

Her parents, Norris and Kimberley, sat down with her that night to discuss the disease. By then, she had typed “Crohn’s” into an internet search and had read what she called “horrible stories” about people having to have their intestines cut out.

“It was the worst feeling in the world,” she said, pausing to wipe away tears. “I love swimming more than anything in the entire world, and I thought my swimming career was over.”

The next year was a blur of doctors’ offices and medical tests and illnesses, including whooping cough and a broken rib sustained during a violent coughing episode. The first Crohn’s treatment she was put on involved a daily regimen of more than a dozen pills, but it was ineffective.

Eighth grade was a nightmare, Baker said. Already thin, she lost more than 10 pounds, prompting her mother to feed her a cheeseburger and a 500-calorie piece of cheesecake each night to try to keep her weight up.

“For years afterward,” Baker said, “I could not eat those foods because I hated them so much.”

When people at school or at swimming commented on her weight loss, Baker told them she was dealing with stomach problems.

“I didn’t want to be known as that sick kid,” she said.

Her health began to stabilize after her treatment was changed to incorporate monthly intravenous infusions that consumed most of two days, including one for recovery. But after a few years, the infusions ceased to be effective, and Baker began a regimen she continues to follow that includes giving herself biweekly injections in the abdomen.

As Baker sought to manage the disease, training through bouts of stomach cramps, nausea and diarrhea, her parents and older sister, Rachel, strained under the weight of her struggles. Kimberley Baker sometimes excused herself to take a shower just so she could release the tears that she held back in her daughter’s presence. Rachel, who swims at Washington & Lee University, struggled to understand why the disease had targeted her sister and not her.

“Of course, I’ve thought ‘why not me?’” Baker’s sister wrote in an email. “It’s hard to watch someone you love suffer, but especially in this case, since we’re close in age, do the same sport, and she was so good while I was never going to go to the Olympics. So it seemed like I should be the sick one, not her.”

Baker’s determination sometimes makes her a difficult patient. It was with great reluctance that she agreed to limit her training to one pool practice a day. Her parents, doctors and coaches have all grown exasperated trying to persuade her to back off during training, or to forgo it altogether, when she is experiencing Crohn’s flare-ups.

“It was always very challenging to get Kathleen not to swim,” said Dr. Clifford, her pediatrician. “It felt like punishment to her.”

Despite spending, as Baker described it, “a lot of high school and my childhood in doctors’ offices,” she steadily climbed the competitive ladder. She won four medals at the 2013 world junior championships and finished second in the 200-meter backstroke at the senior nationals the next summer. That qualified her for the 2014 Pan Pacific Championships and the 2015 World Championships in Kazan, Russia.

In March, as a freshman at the University of California, Baker placed second in the 200-yard individual medley at the N.C.A.A. Division I championships but struggled to manage the cumulative stress from the Pacific-12 Conference championships and the N.C.A.A. meet. As a result, she chose to skip the 200 backstroke at the trials and concentrate on the 100.

The eight-contestant field in the final included the 2012 Olympic gold medalist Missy Franklin and Natalie Coughlin, a former world-record holder in the event. Baker set a personal best of 59.29 seconds to finish 27-hundredths of a second behind the winner, Olivia Smoliga.

When Dr. Kappelman, in North Carolina, found out that Baker had made the Olympic team, he said he called his wife and his parents and then stepped outside his office and announced the news “as if an amazing thing had happened to my own child.”

Baker’s experience on other international trips has made her adept at filling out the medical forms required by the World Anti-Doping Agency and packing her medical kit, including syringes and extra dosages of her medicine in case of emergency. The super bacteria in the waters off Rio do not worry her; Baker knows from gastrointestinal disorders.

“There’ve been times where I’ve said, ‘There’s no way I’m going to go on an international team,’ but somehow it’s worked out,” said Baker, who reported this week to a pre-Olympic training camp in San Antonio. “I’ve gotten healthy enough to swim well.”

Well enough to grace the biggest international stage in sports.

“What this means to me,” Baker said, tearing up again, “is on a whole ’no other level.”

Source: Nytimes.com

Cancer research could help the search towards an HIV cure

By Françoise Barré-Sinoussi, Sharon Lewin, and Steven Deeks

HIV/AIDS is perhaps the most important global health crisis in modern history. Dramatic progress has been made in controlling the virus, but efforts to find a cure are still in its infancy.

To date only one individual, Timothy Brown, is known to have been cured of HIV infection.
The process that cured Mr. Brown, a dangerous and expensive stem cell transplant from a donor known to be immune to HIV, was related to his treatment for acute myeloid leukemia. It is not a practical route to cure others, but it did prove one critical point — curing HIV is possible.
Finding a safe, affordable and scalable cure for HIV is a formidable challenge. Scientists have known for decades that HIV infection persists even when viral replication is effectively controlled by antiretroviral therapy. The virus can hide inside cells forever during therapy and re-emerge rapidly, and at any time, once treatment is stopped.
Despite these challenges, the quest to develop a cure for HIV has made remarkable advances over the past four years. Researchers have not been able to eliminate the virus from anyone except Mr. Brown, but in a handful of cases very early treatment with antiretroviral therapy has enabled an individual’s immune system to control the virus, without any need for treatment. These rare “post-treatment controllers” stay off therapy for years without any evidence of the disease, raising the possibility that pathways to achieving lasting control of the infection in the absence of treatment—a remission using the cancer model—may be available for discovery.

Linking HIV to Cancer

The parallels between HIV and cancer are striking. We now know that controlling HIV in the absence of therapy will require the generation and maintenance of powerful CD8+ — or “killer” – T cells that can target vulnerable parts of the virus. The challenge is remarkably similar to that in oncology, where the goal of innovative therapies is to generate killer T cells that recognize and clear cancer cells.
Many of the key immune pathways now being therapeutically manipulated to cure cancer were first discovered in studies of chronic viral infections, particularly HIV. For example, inhibitory pathways known as immune checkpoint blockers — that control immune responses and ensure self-tolerance — can reverse the brakes on killer T cells, enabling them to clear cancer (and presumably HIV-infected cells). Many people with once fatal cancers are now in long-term remission as a consequence of these new approaches.
Efforts are now underway to determine if these cancer therapies can be used to build up the immune system of patients with HIV in such a way that they too can achieve a durable and perhaps life-long treatment-free state of remission.
Both disciplines also struggle with the need to quantify the burden of disease. Cancer cells and HIV-infected cells are exceedingly difficult to distinguish from normal cells. They often also reside in tissues that are difficult to access. Intense efforts are therefore being aimed at quantifying the size, and distribution, of the disease in both disciplines, with often-similar approaches being taken.
Timothy Brown was cured by the work of a highly resourceful team of oncologists. His case illustrates that we need to do more to bring HIV and cancer research together — incentivizing scientists to work across diseases and ensuring that research funding allows for these synergies.
Transformative advances in the cancer field may well provide inspiration for future directions of a strategy to guide those working towards an HIV cure.

Exercise May Ease Hot Flashes, Provided It’s Vigorous

By GRETCHEN REYNOLDS

Hot flashes are a lamentable part of reaching middle age for many women. While drug treatments may provide relief, two new studies suggest that the right type of exercise might lessen both the frequency and discomfiting severity of hot flashes by changing how the body regulates its internal temperature.

As estrogen levels drop with the onset of menopause, many women become less adept, physiologically, at dealing with changes to internal and external temperatures. The result, famously, is the hot flash (also known as a hot flush), during which women can feel sudden, overwhelming heat and experience copious sweating, a problem that in some cases can linger for years.

Hormone replacement therapy can effectively combat hot flashes, and antidepressants may also help, though drug treatments have well-established side effects. Weight loss also may lessen hot flashes, but losing weight after menopause is difficult.

So researchers at Liverpool John Moores University in England and other institutions recently began to consider whether exercise might help.

Endurance exercise, after all, improves the body’s ability to regulate temperature, the scientists knew. Athletes, especially those in strenuous sports like distance running and cycling, start to sweat at a lower body temperature than out-of-shape people. Athletes’ blood vessels also carry more blood to the skin surface to release unwanted heat, even when they aren’t exercising.

If exercise had a similar effect on older, out-of-shape women’s internal thermostats, the scientists speculated, it might also lessen the number or the intensity of their hot flashes.

Previous studies examining exercise as a treatment for hot flashes had shown mixed results, the scientists knew. However, many of those experiments had been short term and involved walking or similarly light exercise, which might be too gentle to cause the physiological changes needed to reduce hot flashes.

So for the two new studies, one of which was published in the Journal of Physiology and the other in Menopause (using the same data to examine different aspects of exercise and hot flashes), the researchers decided to look at the effects of slightly more strenuous workouts.

They first recruited 21 menopausal women who did not currently exercise but did experience hot flashes. According to diaries each woman kept for a week at the start of the study, some women were having 100 or more of them each week.

The scientists also measured each woman’s general health, fitness, blood flow to the brain (which affects heat responses) and, most elaborately, ability to respond to heat stress. For that test, researchers fitted the women with suits that almost completely covered their bodies. The suits contained tubes that could be filled with water. By raising the temperature of the water, the scientists could induce hot flashes — which typically occur if an affected woman’s skin grows hot — and also track her body’s general ability to deal with heat stress.

Fourteen of the women then began an exercise program, while seven, who served as controls, did not. (This was a small pilot study, and the researchers allowed the women to choose whether to exercise or not.)

The sessions, all of them supervised by trainers, at first consisted of 30 minutes of moderate jogging or bicycling three times a week. Gradually, the workouts became longer and more intense, until by the end of four months the women were jogging or pedaling four or five times per week for 45 minutes at a pace that definitely caused them to pant and sweat.

They also, in the last of those 16 weeks, kept another diary of their hot flashes.

Then they returned to the lab to repeat the original tests.

The results showed that the exercisers, unsurprisingly, were considerably more aerobically fit now, while the control group’s fitness was unchanged.

More striking, the women who had exercised showed much better ability to regulate their body heat. When they wore the suit filled with warm water, they began to sweat a little earlier and more heavily than they had before, showing that their bodies could generally dissipate heat better.

But at the same time, during an actual hot flash induced by the hot suit, the exercisers perspired less and showed a lower rise in skin temperature than the control group. Their hot flashes were less intense than those of the women who had not worked out.

Probably best of all from the standpoint of the volunteers who had exercised, they turned out to have experienced far fewer hot flashes near the end of the experiment, according to their diaries, with the average frequency declining by more than 60 percent.

These findings strongly suggest that “improvements in fitness with a regular exercise program will have potential benefits on hot flushes,” said Helen Jones, a professor of exercise science at Liverpool John Moores University, who oversaw the new studies.

Precisely how exercise might change a women’s susceptibility to hot flashes is still not completely clear, although the researchers noted that the women who exercised developed better blood flow to the surface of their skin and to their brains during heat stress. That heightened blood flow most likely aided the operations of portions of the brain that regulate body temperature, Dr. Jones said.

The cautionary subtext of this study, though, is that to be effective against hot flashes, exercise probably needs to be sustained and somewhat strenuous, she said. “A leisurely walk for 30 minutes once a week is not going to have the required impact.”

Source: Well.blogs.nytimes.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

The Unexpected Way I Battle My Trichotillomania

When I was 14, a family friend told me that when I noticed a split end, I should yank the strand from my head to get rid of it. I tried it and the sensation felt warm and comforting, as if I was ridding my body of a strange pain.

I was a quiet, introverted girl who felt awkward in every social environment. Pulling was the best stress reliever I had ever found. I kept pulling and soon noticed bald patches forming; ripping out my hair became a habit. I’d developed an obsessive-compulsive disorder called trichotillomania, the irresistible desire to pull out your hair — and I couldn’t stop.

The ridicule didn’t help, either. “Punk rocker,” students whispered as I walked through the hallways at school, since it looked as though I shaved the back of my head. I attempted to hide my bald patches by wearing headbands, but boys would pull them off and joke that I was Sinead O’Connor. I tried to smirk and blow them off, but the emotional pain bubbled up to my head and I yearned to pull.
Adults weren’t necessarily kinder. “Jennifer, I got lectured by the janitor last night,” one of my teachers announced to the class one day. “He said he vacuums up so much hair around your desk it broke the vacuum.” Everyone turned to look at me and laugh. I sat on my hands, my embarrassment making the urge to pull even greater. I headed straight home that day and pulled, leaving a pool of hair beneath me, then gathered up all the strands and flushed them down the toilet, trying to rid myself of the evidence.

I’D DEVELOPED AN OBSESSIVE-COMPULSIVE DISORDER CALLED TRICHOTILLOMANIA, THE IRRESISTIBLE DESIRE TO PULL OUT YOUR HAIR — AND I COULDN’T STOP.

Even athletics, which I’d enjoyed before, became emotionally painful. Once, before a basketball game organized by my youth group, I pulled my hair back and out of my face, revealing my bald spots. Girls asked if I had cancer while boys snickered and pointed. Because physical activities required me to wear my hair up, exposing my disorder, I stopped them altogether, asking my parents to get special permission for me to opt out of physical education classes in junior high and high school. Making it through each day felt taxing and I retreated even more on days I felt extra bullied, heading to my room to pull. People asked, “Why don’t you just stop?” I couldn’t. Pulling felt delicious, desirable, and easy. It was my relief from others’ cruelty.

Even after I escaped high school and its bullies, I couldn’t kick the habit that had followed me since age 14. Over the years, I tried every treatment for my OCD I could find. I visited a slew of therapists who all looked at me as if I were untreatable. I kept rubber gloves at my desk to wear as I typed. I wore hats whenever I wasn’t at work. Nothing worked.

I had all but lost hope. But on a vacation to Mexico 12 years ago, I noticed a triathlon taking place next to my hotel. As I watched sinewy, muscled athletes speed out of the water, hop onto bikes, and run at a pace faster than I ever could, I felt something I hadn’t felt in a long time: inspiration. My exercise routine consisted of solo runs on a treadmill at a local gym, with my headphones on to avoid conversation. But watching the triathlon, I thought that maybe I could become an athlete: powerful and confident. I began to visualize crossing the finish line, telling my friend, “I wouldn’t care if they were tearing down the event by the time I finish. I only want to finish.”

I didn’t even know how to swim, but I was undeterred. I signed up for lessons at a local Y.M.C.A. and drove out to a lake to practice every weekend. I spent hours dodging traffic as I ran through local streets; I purchased a fancy, expensive bike and learned to shift gears like a pro.

As I trained for my first triathlon — the Lake Pleasant Off Road Triathlon, a small event just north of Phoenix — my only goal was to cross the finish line, but I gained much more than I expected: I had found something that made the desire to pull subside. Swimming kept my hair wet, which made it harder to pull, biking kept my hands glued to the gears, and pulling while running was impossible. A two-hour workout meant a pull-free couple of hours.

I realized that had I wasted years trying to find freedom from pulling when all I needed to do was slip on a pair of running shoes, which made me sad that I hadn’t found this new hobby sooner — but also stirred an ambition in me to take my endurance training to another level. I soon joined a triathlon training group and a master’s swim team to keep me working out more and pulling less. We biked together on Saturday mornings and shared stories at reverse happy hours after Tuesday-night track sessions. Friendship followed fitness and I received invites to weddings, baby showers, and camping trips before out-of-town races. Finally, I had found a community where I felt confident and comfortable.

MY ONLY GOAL WAS TO CROSS THE FINISH LINE, BUT I GAINED MUCH MORE THAN I EXPECTED: I HAD FOUND SOMETHING THAT MADE THE DESIRE TO PULL SUBSIDE.

As my hair started to grow back, my confidence grew with it. I worked my way up to finishing an Ironman in 2009. The day I crossed that finish line was the best day of my life — the euphoria lasted for months. I remember sitting in my car on Thanksgiving a week after the race, feeling an overwhelming sense of gratitude for a body that had allowed me to accomplish something so significant. I used to hate my body because I felt unattractive without hair. Now, I love and appreciate it. I still pull a lot, but now, pulling doesn’t define me. Instead of dwelling on the past, I keep my eyes on the next finish line.
Source: Refinery29.com

Sad News: Lil Wayne Suffered Another Seizure


Last month, Lil Wayne‘s plane had to make an emergency landing due to the rapper suffering a seizure. Unfortunately, he again was hospitalized last week with his epilepsy striking once more.

Wayne suffered another seizure last week, which resulted in the rapper having to cancel his performance at TAO nightclub in Las Vegas. He was scheduled to perform prior to a UFC 200 party. According to the report, the seizure struck just moments before he was due to take the stage.

Sources shared with TMZ that Weezy’s seizures in the recent month are due to a medication issue, with doctors still figuring out an effective balance of Rx for the rapper.

Following his ICU visit, Wayne is now released and currently resting in Miami.

Written by KC Orcutt

(Photo: Theo Wargo/Getty Images for TIDAL)

Source: Bet.com

Partially Paralyzed Man Completes 101 Skydive Jumps in a Single Day for Parkinson’s Research

BY CAITLIN KEATING

Kevin Burkart was attempting to do 300 skydives in one day in 2012 when a snowmobile accident in northern Minnesota paralyzed his left arm.

“It was devastating, but I pushed forward,” Burkart, 44, tells PEOPLE. “I wasn’t going to let that slow me down.”

The professional competition and tandem skydiving instructor (who has been jumping since 2002) wasn’t just doing it for the thrill. In 1999, his father, Gary, was diagnosed with Parkinson’s disease. Burkart has since made it his mission to help find a cure.

“It’s the second most common neurodegenerative disease,” he says. “But it doesn’t make any noise.”

Burkart, who cares for his father who is now in the late stages of Parkinson’s, says it’s painful to see someone you love go from being healthy to using a cane and then a walker.

“The people who have it are normally older. They’re humble and just going quietly into the night,” he says. “It’s amazing how quickly you go from being a baby and being taken care of to then taking care of your parents.”

Between three skydiving events in 2008, 2010 and 2012, Burkart raised $250,000 for research into the disease.

Then, on June 15, despite high winds gusting up to 29 mph, he completed 101 jumps in just 24 hours in Baldwin, Wisconsin.

Throughout the day, 400 people came to watch him at Skydive Twin Cities. There were also food trucks, information booths, speakers, yoga and massages available to everyone who came to the big event.

Partially Paralyzed Man Completes 101 Skydive Jumps in a Single Day for Parkinson's Research| Medical Conditions, Real People Stories

“It was a really special day,” says Burkart who recently got married. “I almost broke my ankle a couple times and it beat the heck out of me, but it felt so good doing this and knowing I was raising money for this disease. It might be too late for my father, but it might help others.”

Skydivers in that particular area typically jump at 13,000 feet, but Burkart was jumping from a height of 2,000 feet due to the amount of jumps he attempted.

Although he came short of his goal to complete 300 skydives that day, Burkart, who raised $128,000 at the event for the National Parkinson’s Foundation, says he still feels like he accomplished a great deal.

“This is just the beginning,” he says. “We have a lot more fighting to do.”

Source: People.com

What To Eat During Pregnancy Infographic

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