DOuBLE JoINTed ELBOWS UNITE!!!!!! -
ThankZ KATBAMKABOWW!!
this is soooo creepy….
Haha, my elbows are like the only joint in my body that doesn’t hyperextend a lot, although I dislocated them several times and had to have them put back in by the doctor when I was a kid.
Popping Ribs
Here’s an article abou popping ribs, which happens to me all the time. Hurts like hell but I tend to pop them back into place using wall corners, the edges of chairs, or my own hands.
“Madonna did it, Eddie Stern did it, and I did it. I’m talking about popping a rib in yoga. It turns out that what sounds like a hideous affliction isn’t all that unusual among people who regularly bend and stretch their bodies. Or bad-asses.
My rib went out during a week-long yoga retreat. I was practicing five hours a day, despite my teachers’ advice that I choose either the Ashtanga or the vinyasa class each morning. A muscle gradually clenched up and pulled on a rib, and that was that. I felt like I’d been kicked by a horse.
I should add that in New York I regularly take trapeze classes, and they really work my intercostals, those little muscles between the ribs.
Right after the retreat (and a bunch of Advil), I saw my acupuncturist. He winced as he said, “I’ve done that. Go see a chiropractor.” My yoga teacher, the endlessly patient Barbara Verrochi at the Shala, wouldn’t let me practice and said, “I’ve done that. Go see a chiropractor.”
So I went to seeDr. Doug Willen, who gave me some perspective, as well as a gentle adjustment, which brought immediate (partial) relief: “I see this all the time, in ballet dancers, yogis, and Spin people,” he said, “but also from coughing, sneezing, straining to go to the bathroom, or sex with a heavy partner.
”Popping a rib sounds dangerous, but typically isn’t. The ribs, he explained, connect to the sternum and vertebrae with flexible cartilage and are meant to move as we breathe—think of the handle on a bucket. What’s commonly called popping a rib (and in chiropractic circles called a subluxation—a misalignment that’s less significant than a dislocation) is more accurately thought of as jamming a rib and limiting its mobility. The chiropractic adjustment is to free it, not to push it back into place.
Part two of treatment is rest until the inflammation subsides. Ten days off from my daily Ashtanga practice wasn’t easy, but here Verrochi offered some wisdom: “Yoga injuries have been getting a bad rap lately, but you learn important things from injuries—to be more mindful, to move slower and be patient.” I guess we could all learn to practice those. —Ann Abel”
My back hurts a lot right now :(
You can see my “hump” in this picture, which is caused by a rotation of my spine as well as subluxed ribs.
EDS Family Wins Home Renovation
When Nicki Himmelman shared her family’s story for a chance to win a $100,000 Ramar home renovation, she never dreamed she’d win.
But last week, Himmelman got the call that she said will change her life. Her entry was selected as the winner of Ramar’s inaugural Home Sweeter Home Contest.
For years, she has struggled with joint issues and chronic pain. But she only learned what was wrong less than a year ago when a geneticist diagnosed her young daughter with Ehlers Danlos Syndrome.
“EDS is a rare connective tissue disorder. We have what’s called Type 3, a hyper mobility type which causes loose joints, frequent subluxations and dislocations as well as loose and stretchy connective tissue throughout the body,” Himmelman explained.
“It causes chronic pain and basically loss of mobility. For instance, my hands don’t work as well as they once did and I don’t have the dexterity to do things like crocheting or fine bead work like I used to.”
The family of five recently purchased their first home, a three level semi in Lower Sackville. Himmelman’s joint issues sometimes make it difficult for her to navigate the steps to the top floor to the family’s only bathroom and her bedroom.
She often spends her evenings on the couch because she can’t make it up the stairs to her bed at day’s end.
Going downstairs to her basement laundry room is equally tricky and challenging, so her request was for a home renovation to accommodate her and daughter Brennah’s disabilities.
Brennah has already had two orthopedic surgeries to help tighten her knee, which was dislocating on a daily basis. The seven-year-old wears two leg braces, undergoes regular physiotherapy and faces many more surgeries.
A main floor bathroom, laundry room and wheelchair accessibility throughout the home were on Himmelman’s wish list. At her current rate of deterioration, she will likely be wheelchair bound within three years.
The reality of winning the contest hasn’t yet sunk in.
“Just the fact that our family was chosen for the top five, I was so honoured just to be considered because the stories were all so moving,” she said. “This will absolutely change our lives.”
Ramar will be constructing a bedroom with ensuite bathroom and a laundry room on the main level, along with wheelchair accessibility inside and outside the home.
Like Nicki, her husband Dana is overwhelmed with gratitude. He works offshore three weeks on and three weeks off. Himmelman said he constantly worries about his family when he’s gone.
“This will enable me to better take care of my family and Dana doesn’t have to worry anymore when he’s away,” she said. “He feels guilty leaving me to take care of all three kids because it is challenging, it’s physically dangerous. We don’t have to worry anymore.”
For young Brennah, the fact Ramar is building her an accessible backyard play structure is the best part of the contest win. Her health issues make it impossible for her to use a regular playground.
The company started planning the contest more than a year ago. Ramar Group’s CEO Ben Young said the idea evolved out of a meeting where staff were discussing the most recent community projects they wanted to sponsor or become involved with.
“We feel it’s our responsibility as a company and as individuals to take time and help somebody else,” Young said in an interview. “At the meeting someone said something about volunteering to do a home makeover. It spun into finding a family that needs help and we hoped the contest would also motivate others to do similar things on perhaps a smaller scale.”
The company received more than 200 entries, although some had to be disqualified because they were from outside HRM or weren’t completed. A total of 166 qualified entrants from throughout HRM submitted their personal stories via Facebook, outlining how a home renovation would change their lives.
More than 13,000 individual votes were cast online throughout the contest, which Ramar hopes to do again.
Young said whittling the list down to the final five, and then deciding on one winner, was the most difficult part of the contest. The final five were from Tantallon, Halifax, Beaver Bank, Sackville and Fall River.
“We could have picked 20 candidates as deserving as the family we chose. We had great candidates to pick from,” he said. “Her (Nicki’s) story was very compelling and when we went to visit saw that she is a very, very humble person.”
Once the permits and plans are confirmed, Young expects to start work within a month or so.
“I think the best part of this contest is getting to actually work with this family and hopefully make a real difference,” he said. “I like to think of this as a ‘pay it forward’ idea. We hope this encourages others to do even small things like hold a door open or buy a coffee for a stranger to put a smile on their face.”
Himmelman described this as a year of blessings. In addition to the win, she just began working as a part time freelance photographer for The Weekly News. In addition to getting paid to pursue her passion, it works around her EDS.
“I am also so grateful to have an opportunity to raise awareness about EDS through winning this. I can’t put into words how much this means,” she said.
Chris Trapper presents a concert to benefit invisible illness
Don’t miss an evening with Chris Trapper to benefit invisible illness.I can’t decide what was better, the overalls with one side undone or the music.
Yeah, it was definitely the music. If you agree, and especially if you are a fan of bands like Matchbox 20 or even better, The Push Stars, you can’t miss The Push Stars’ lead singer Chris Trapper in concert this Saturday, April 14 at Lou & Harry’s Sports Bar.
Better yet the concert benefits a great cause - invisible illness.
The event is being organized by two local sisters Katie Dam Jaskolski and Allie Dama.
Katie and Allie grew up in Lansing and were both nationally ranked gymnasts.
Despite their high level of fitness, both women were struck with mysterious illnesses. After becoming suddenly sick in 2010, and spending months seeing multiple doctors, Katie was diagnosed with Ehlers-Danlos Syndrome and Dysautonomia (POTS). Katie spent most of 2010 and 2011 very ill, unable to work.
In 2008, just months after completing her most successful collegiate gymnastics season to date, Allie grew mysteriously ill and was later diagnosed with Polyarteritis Nodosa Vasculitis (PAN).
Both women have battled against their illnesses and have won major victories.
Most importantly Katie and Allie have become passionate about raising awareness of these rare, often overlooked and undiagnosed illnesses and have organized a benefit concert featuring critically-acclaimed singer/songwriter Chris Trapper.Proceeds will be donated to Ehlers Danlos National Foundation, the National Dysautonomia Research Foundation and the Vasculitis Foundation.
Tickets are $30. For more info click here.
(Source: mlive.com)
the world spins madly on.: ATTENTION EVERYONE
THIS IS IMPORTANT.
Please take a minute to SIGN THIS PETITION against MAXIM, who recently posted an article on their website titled “5 Diseases We Wouldn’t Mind Having”, where they highlight chronic conditions that are “cool” and/or “good to have.”
The articles begins, “Getting…
Hey EDSers…
im sure there are tons of these, but can we reblog this, i want to make sure i get to follow as many of you as possible and make it easier for people to find each other. we should be a community since so little of the medical community even know we exist.
I would like a community.
I’d like a sandwich but I would also like a community.
(Source: holylemonlimabatmanitskaytipond, via dysanic)
Download the PDF of this wallet card, which will provide information to health professionals in an emergency situation. Let friends and family know that this information is in your wallet and consider a medical alert bracelet.
Children with Ehlers Danlos Face Severe Food Allergy Risk
Life is already difficult for children who have Ehlers Danlos syndrome, which is characterized by joint hypermobility, cardiovascular issues, and other problems. Now a new study indicates these children may face a high risk for severe food allergy that is difficult to manage.
Allergy risk found in Ehlers Danlos type 3
Ehlers Danlos syndrome is a group of inheritable disorders in which individuals have genetic defects that cause problems with a protein called collagen, a material in connective tissue. Connective tissue provides support to the skin, muscles, organs, and ligaments, and so individuals with the syndrome experience a range of symptoms and life challenges.
There are six main different types of Ehlers Danlos syndrome, and each type is classified by its characteristic signs and symptoms. Ehlers Danlos syndrome type 3 is most characterized by joint hypermobility that affects both large (knees, elbows) and small (toes, fingers) joints.
Rebecca M. Cutts, MBBS, of Great Ormond Street Children’s Hospital in London, and her colleagues, announced at the annual meeting of the American Academy of Allergy, Asthma, and Immunology they had discovered a high prevalence of food allergy among 19 children with Ehlers Danlos syndrome type 3.
Children with Ehlers Danlos type 3 often experience dislocations of their joints, especially of the shoulder, knee, and temporomandibular joint (in the jaw). Chronic limb and joint pain is common and can be debilitating, and hyperextensibility of the skin and bruising vary in severity.
Among the 11 boys and 8 girls in the study, who averaged about 8 years of age, 74% tested positive for allergy to milk, egg, wheat, and soy using the food elimination test. A few also exhibited symptoms when exposed to bananas, dairy products, gluten, and nuts.
Typically, individuals who are allergic to foods can control their symptoms if they avoid the offending items. However, among children with Ehlers Danlos type 3, it’s not that simple. Cutts noted, “This is a population that is extremely difficult to manage.”
Symptoms among these children included abdominal pain (90%) and constipation (90%), and all of them needed several medications, including antihistamines and immunosuppressants. Two-thirds required proton pump inhibitors, and 13 children required artificial nutrition either via a stomach tube or intravenously.
More about Ehlers Danlos syndrome
The prevalence of Ehlers Danlos syndrome is approximately 1 in 5,000, affects both males and females equally, and crosses all racial and ethnic borders.
Gastrointestinal problems are common in Ehlers Danlos syndrome because of the fragile nature of the connective tissues. Therefore, individuals can experience gastroesophageal reflux disease (GERD, irritable bowel syndrome, constipation, diarrhea, hiatal hernia, and other complications.
Children and adults with Ehlers Danlos syndrome face daily challenges associated with joint hypermobility and skin issues. Their loose and unstable joints make them highly likely to develop osteoarthritis at an early age, and their fragile skin makes them prone to tears and bruising that is accompanied by slow wound healing and the possible development of molluscoid pseudo tumors (lesions that develop over pressure areas).
In addition to living with these challenges, people with Ehlers Danlos syndromehave reported receiving poor attention from the medical community. A study published in the January 2010 issue of Disability and Rehabilitation noted individuals with the disease reported “being ignored and belittled by health-care professionals” and sometimes “being treated and considered merely as an object.”
The findings of this latest study suggest children with Ehlers Danlos type 3 may face the risk of severe food allergies that are difficult to manage. Parents of affected children may want to seek help or support from knowledgeable health-care providers, support organizations such as the Ehlers-Danlos National Foundation, and parents of other children with the syndrome.
Thanks to Ehlers Danlos syndrome, I have bad strechmarks on my hips and knees. People ask me what they’re from a lot because they look like bad scars. I’ve had people ask if they were self-injury scars before. I could cover up all the time, but is it really that big of a deal?
(via thin-h0pe)
Moms and Disabilities
The comments section has some interesting discussions of invisible disabilities including specific discussions of EDS.
This week’s column on Mommyish is sort of a sister column (or maybe a cousin column) to last week’s article about moms and “old people.” Except instead of moms bitching about how old people ruin everything, they’re complaining about needing special treatment and/or wanting pregnancy and motherhood to be treated as a disability. The article was inspired by an article that ran on the Huffington Post last week called, “Pregnancy As Disability: Professor Wants Coverage Under American With Disabilities Act,” which is worth reading so you can form your own opinion on the matter. Basically, a law professor is suggesting that “pregnant women experience symptoms that may warrant special treatment accommodations from their employers and that pregnancy should be covered by the American Disabilities Act (ADA).”
Let me preface the rest of this post by saying that I believe the professor’s interests lie mainly in protecting women from their shitty employers, and I can understand why she’s pushing for the legislation. But because I run this blog, and I’ve seen what I’ve seen, I also happen to believe there are many women out there who could potentially abuse the idea of pregnancy as disability. We’ve already had discussions about expectant and new mother parking and parking lots “over-accommodating” for disabled drivers (plus moms who opt to park in handicap spaces anyway), and today I’d like to share a few more examples of women who believe their “disability” (being pregnant or being a mom) warrants extra special treatment in bathrooms and parking lots.
Bathrooms
Emily’s complaining about not wanting to wait in line to use the large handicap restroom stall, but unfortunately, that’s the deal. Yes, it sucks that some restrooms only have the changing table in the large stall, but even when that’s the case, all it takes is simply waiting your turn in order to get in there and do your “spacious” business. Spread out and have a picnic if you want to once you’re in there, but until you are, realize that the person using that stall, A) does not have to be handicapped, and B) may very well be handicapped but not in an obviously noticeable way.
Also recognize that having a large stroller does not make you “more eligible” for a handicap stall than other people who do not have a disability. Having a large stroller may allow you to push through crowds easily and take up entire sidewalks, but it does not, in fact, allow you to ram your way into the largest stall in the bathroom if it is already occupied. Sorry.
Parking Lots
Jordan is “just saying” that not only should pregnant women and people with small children get preferential parking, but ALSO that she’d be down to go head-to-head with some of these so-called “handicap parkers” to prove that it is far more annoying to have to walk a few extra feet to the door at the grocery store when you’re pregnant than it is when you’re disabled.
I mean, hello, most disabled people are disabled for their whole lives. That means they’re used to struggling to get in and out of places. Jordan is only going to be pregnant and have small children for like seven years, so for her it is an enormous burden. Don’t people “get” that? Don’t grocery stores realize that pregnant women and moms are their most preferred clientele?! If they don’t, they should! Especially since, like Stacey said, some “handicap” parkers even wear high heels. Show me a true disabled person who can wear high heels! I mean seriously, people! It’s like no one even thinks about mothers anymore.
I have syndactyly type 1 of my fingers. This means that my fingers are webbed. In the womb, the fingers are all webbed, but this webbing disappears through a process called apoptosis at week 16. It is present on all of my fingers and some of my toes, but it is most noticeable between my middle and ring fingers on my left hand. It prevents me from being able to wear a traditional wedding band. I’m seeing a doctor about whether or not I want to have it surgically corrected.
This shows a positive thumb sign for arachnodactyly— the entire thumbnail protrudes beyond ulnar border of hand. Arachnodactyly means “spider fingers”, so my fingers are long and slender. It was the first thing my mother noticed about me when i was born. Arachnodactyly is a sign of Marfan Syndrome, Ehlers-Danlos Syndrome, and a few other genetic disorders.
“My Olympic Dream”
by Cadisha Brown
http://www.kidderminstershuttle.co.uk/news/local/9420330.My_Olympic_dream/
A SELFLESS Stourport youngster who suffers from a rare genetic disorder has been chosen to carry the torch for next year’s Olympics.
Fourteen-year-old Lucy Fellows was nominated by her mother Louise for bravely coping with Ehlers-Danlos syndrome (EDS) - a group of inherited connective tissue disorders.
Despite suffering from the condition, the Stourport High School and VIth Form Centre pupil has to help care for Mrs Fellows, who also has the disorder.
The condition means Lucy has problems with collagen - the material that provides strength and structure to skin, bone, blood vessels, and internal organs - which causes her problems with her joints.
Lucy, who is a member of the Watch Wildlife Group, said she was “excited” and “shocked” when her mother told her she would be taking part in the Olympic Torch relay with thousands of other torchbearers across the country.
“At first I was quite scared because there will be lots of other people there looking at me,” she said, “I’m looking forward to doing it. It took me a while to get used to.”
She added that she would be taking part in the relay somewhere between Gloucester and Worcester but hoped it would be close to home.
Mrs Fellows said: “I was absolutely amazed when I got the email to say she had been chosen. I was having a bad day with my illness so it was amazing to get that news.
“I was so excited and I couldn’t wait for her to get home from school to let her know.
“I’m really proud and excited because she’s very good at helping me. She struggles with a lot of school attendance and her own joint problems . She’s amazing. She’s fantastic.”
