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

Genetic disease kills 5 men in family – EDS

WYOMING, Mich. (WOOD) – Darlene Yasick’s family has known heartache and loss but it’s a well of hope, deep faith and unending love that has gotten them through the toughest of times.

“If you don’t have hope, then there is nothing,” said Yasick.

Her family suffered its first loss in 1989.

“My husband passed away in 1989. At the time that he died, we didn’t know what the cause was. He was 48 years old.”

But it wasn’t until years later they would find that it was something called Ehlers-Danlos Syndrome — a deadly genetic disease — that killed him.

Since Yasick’s husband Gene died, she has lost three sons and a grandson to EDS.

Yasick describes it as a “nightmare and you can’t wake up from up it.”

According to the Ehlers-Danlos National Foundation, those that have EDS “have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a ‘glue’ in the body, adding strength and elasticity to connective tissue.”

That means, essentially, that EDS weakens the bonds that hold organs, vessels and arteries together.

There are six different kinds of EDS. All five of Yasick’s family members who died had the Vascular Type — the most serious form, according to the Ehlers-Danlos Syndrome Network.

The Vascular Type of EDS can lead to the sudden rupturing of arteries or organs as the result of even minor trauma.

“There is no treatment. There is no therapy. Right now, there is nothing if you have it you have it,” Yasick said.

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Teaching assistant adds her voice to school’s play equipment appeal – Ehlers–Danlos syndrome.

col_smiles_shLIZZIE Kilby dreamed of being a runner.
As a child, it was all she ever wanted. She dreamt of running for Essex and competing in the Olympics.
But her hopes and dreams where left in tatters when she was diagnosed with Ehlers–Danlos syndrome.
The condition occurs when the body’s collagen is defective causing joints to repeatedly and regularly dislocate.
Lizzie started to use a wheelchair when she was ten and by the time she was 13, she was in it permanently.
“I was the fastest runner in primary school,” she said.

“I used to run with a club and I did trampolining. To be a runner was all I ever dreamed of, I set my heart on it.
“All of that disappeared within seconds of me getting in the wheelchair.”

But Lizzie is a feisty and determined woman and her innate stubbornness means she is not one to give up easily.
She went to college where she studied health and social care and did work placements in mainstream and special needs schools.
Today, she works as a teaching assistant but, as with everything in Lizzie’s life, it hasn’t been an easy journey.
One of her work placements was at Lexden Springs School in Halstead Road, Colchester. She loved the school so much she returned as a volunteer.

Then she became a midday assistant and then a part-time learning support assistant before working her way up to her current job.
But every day Lizzie battles with pain as her joints – her wrists, fingers, ankles, knees, elbows, shoulders, even her vertebrae – dislocate.
Her husband Tom, who is also a teaching assistant at the school, said: “She can have 30 dislocations a day, five before 9am.”
Calmly, stoically, Lizzie pops the joints back into position.

She wears splints on her wrists, hips, legs to try to keep them straight.
But despite the pain, she defiantly refuses to let the condition rule her life.

Read More: Daily Gazette