St. George’s Erika Crawford tells her story in the hope that others will give – EDS

CRAWFORDErika Crawford had 56 blood transfusions last year.

The 18-year-old from St. George was diagnosed with S1 protein deficiency, a clotting disorder, an iron deficiency and Ehlers-Danlos syndrome — a connective tissue disorder that effects her muscles, joints and organs — in 2012.

She has had many surgeries, including a skull realignment, total ACL repair, spine decompression and more.

“It’s a progressive disease,” she said. “I know it’s only going to get worse.”

Without the blood transfusions that keep her stable, Crawford would have many more problems — or worse. She may not be here.

“I know what it’s like to be sick,” she said. “There are so many other people who need support and I want to give back.”

Read More: Brant News


Young Limerick mum battles pain worse than child birth – EDS


IMAGINE being worried about dislocating your shoulder every time you brush your hair.

This is what faces one young Limerick lady with a rare condition called Ehlers-Danlos syndrome (EDS). It affects around one in 10,000 men and women.

Zondra Meaney, aged 28, says she is in chronic pain every day but also gets flare-ups that are worse than child birth.

“When I had my son that pain doesn’t even compare to the pain that I get. In my own way I have a high tolerance to pain because I am used to pain but I do feel a lot of pain as well. I am in pain every day.

“When I went in to hospital they gave me two IV shots of morphine, a shot of tramazol, codeine, two drips of paracetamol –
this was all together and that only took the edge of the pain I was in,” said Zondra, who has been in University Hospital Limerick or housebound for the last couple of months.

The Dooradoyle mum of one says EDS is a connective tissue disorder.

“Basically connective tissue is the glue that holds your body together. Everything in your body is made up of connective tissue. EDS can affect people in different ways – it can be mild and it can be life threatening.

“How it started with me was muscular weakness and joint problems. When we looked back, when I was a child I would have had a lot of broken bones and sprains.

“Now my joints dislocate quite easily, especially my hip joints. My hip joints dislocate on a daily basis so that will lead to a lot of joint pain. It also affects my cardiovascular system called postural orthostatic tachycardia syndrome (POTS). I have to take something to constrict my blood vessels because when I stand up my blood vessels don’t constrict so what happens is my blood flows into my legs so there is no blood going to my brain.

Read More: Limerick Leader

Caroline on track for more medals after Lions boost – EDS

fbA WORLD champion indoor rower with Northumberland roots has received vital support from a Morpeth community organisation.

Caroline MacDonald, who suffers from Ehlers-Danlos syndrome, has made big waves in adaptive rowing in the Arms and Shoulders category.

She is the current world record-holder and champion over one kilometre and she is a European and British outdoor champion.

Unfortunately, last year she broke her specially-adapted rowing seat used for indoor training and competitions.

Caroline started fund-raising with the help of her family, but it was taking months to raise the total needed and she was losing valuable training time.

However, Margaret Trewick of Morpeth Lions came to hear of her efforts through her parents in Ashington and put forward a case for funding help from her local club.

Read More: Morpeth Herald

Dog brings hope to Ehlers-Danlos Syndrome sufferer

Meredith ButenhoffTo look at 16-year-old Meredith Butenhoff, one would think that she’s the picture of health. The pretty blonde high school student from Greenville has a ready smile and speaks with a soft melodic voice that belies the fact she suffers from Ehlers-Danlos Syndrome (EDH), a condition that causes chronic fatigue, dizziness, and joint pain.

Meredith was diagnosed with EDH at the age of 11 and she, along with her family, have been courageously battling the syndrome and endeavoring to lead as normal a life as possible ever since. About three years ago, a ray of hope came into their lives in the shape of a dog.

While the family was attending a medical conference, they learned about Palmetto Animal Assisted Life Services or PAALS, a South Carolina based organization that trains and places assistant service dogs with individuals such as Meredith who need help with daily tasks that the average person takes for granted.

“Most people don’t think twice about things like turning on a light switch or opening a door, but these are things that are a real challenge to our clients,” said Jennifer Rogers, PAALS executive director. “We train our dogs to do up to 70 behaviors that can assist people with a variety of disabilities so they can live more independent and enriched lives.”

Read More: The Columbia Star

Broken limbs, dislocated hips and joint pain: Woman on battling rare, inherited condition

edsKatie, 34, lives in Essex. Eleven years ago she was diagnosed with Ehlers-Danlos syndrome, a condition that causes her regular injuries, even in her sleep. She says:

“By the time I reached my seventh birthday, I had already broken my arm three times. I seemed to be forever falling over and hurting myself and I was always covered in bruises. Everyone just assumed I was clumsy. But, just like my mother and sister, I was hypermobile – or double-jointed as we called it back then – and I used to show off by doing the splits or bending my hand behind my elbow. Being flexible felt like a gift and it was my dream to be a dancer one day.

Then at senior school I began to feel a lot of pain in my joints, especially in my hips and shoulder blades. I had to take paracetamol two or three times a day to deal with the discomfort and I began to get regular injuries. When I was 14 I dislocated my right hip just walking down the garden path. Another time I dislocated my left ankle on the trampoline at school and had to be rushed to hospital.

By the time I reached 16 I had dislocated my hips about 50 times, but my GP thought all the problems were caused by my dance classes.

“You need to stop,” he told me. “Otherwise you’ll be in a wheelchair before you’re 40.”

My parents got me referred to a physiotherapist for a second opinion. She said I could still dance but my hips were so fragile that I should no longer walk up or downstairs. I had to have all my lessons on the ground floor at school, and at night my dad had to carry me up to my bedroom. I knew there was something seriously wrong with me, but I was worried that people would think I was a hypochondriac so I just soldiered on, all the way through school and university too.

Read More: Express

Tal Golesworthy: How I repaired my own heart Tal Golesworthy is a boiler engineer — he knows piping and plumbing. When he needed surgery to repair a life-threatening problem with his aorta, he mixed his engineering skills with his doctors’ medical knowledge to design a better repair job.

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How I live with Hypermobility Syndrome

yogaHypermobility Syndrome (HMS or Ehlers Danlos Syndrome- Hypermobility Type) is a condition that affects 10-20% of the population. Some people who fit the diagnostic criteria for HMS will have no apparent negative effects as a result, for others it is a debilitating condition that can seriously impair their mobility and manifest with symptoms as diverse as joint dislocations, fatigue and heart murmurs.

I am somewhere in the middle of this scale. I have chronic joint pain, and frequent joint subluxations (partial dislocations). Without appropriate care, joints become unstable, I fall frequently causing damage to my joint surfaces and ligaments. Having lived with this condition for 20 years, I have found ways to manage it, and am able to maintain good mobility within my own boundaries – a far better outcome than my original prognosis. Here are some of the tips that have helped me manage my Hypermobility Syndrome:

Use it or lose it – keep active.

I know I am not going to be running any marathons, but that does not mean I have to submit to the sofa completely. I choose ways to keep active that within my capabilities.

Can you swim? Maybe breaststroke is too much for your hips, so how about crawl? How about some gentle yoga? Learning to maintain your alignment whilst gently building strength in your posture is really beneficial. Be aware that I am not advocating stretching for flexibility here, but strong yoga postures to stabilise the joints. Can’t stand? How about chair yoga ?

Even if all you can do today is sit up in bed for a bit, challenging your body in a sympathetic manner will not only help you maintain your physical ability, but will also make you feel good.

Make your plans as flexible as you are.

Some days I wake up feeling spritely and good, some days I wake up creaky, aching and tired. Sometimes I get better as the day progresses, sometimes worse. I have to be prepared to adjust my plans accordingly because I have learned that there is no point putting more strain on myself unnecessarily

Hormonal changes and pregnancy can seriously impact the state of your ligaments, so always be mindful, and non-judgmental, of your capabilities at this moment.

Read More: Yahoo Lifestyle