EDS is a heritable connective tissue disorder. It is a rare disease with many variations in presentation and severity. Types of EDS can range from mildly troublesome to life threatening, leading to early death. Skin can be loose, joints can be lax or organs and blood vessels may rupture.

I lost a dear friend from/to this disease. A main artery in her heart ruptured suddenly and without warning. She underwent cardiac bypass, a repeat surgery to stop further leaking and then she ruptured a hole between her atria and her ventricle. This was repaired with hopes of a heart transplant but she did not survive long enough.

Milder forms can cause trouble with wound healing, joint pain, loose skin and severe bruising.

Children with hypermobile joints should not do "tricks" to show off their flexibility as this increases the joint pain they will suffer in later life.

Almost a year later...

I only wish it could have come true...These are the words we put on a card for the flowers we made for her which she could only glance at because flowers were not allowed in the ICU...I just found this on my hard drive.

Dear Marian,

The flowers and leaves are to remind you of the wonderful fall season just waiting for you to come home and enjoy.

The berries and seeds are to remind you of spring, when this will all be a distant memory.

The boot is to remind you of your wonderful children waiting for their mom’s return but probably still leaving things laying around. After all “boys will be boys”.

The rock is to remind you of the strength you possess and the strength of your wonderful husband who is holding it all together in your temporary absence.

The ball of string is to remind you of all of us, bonded together in so many ways. We love you.

AND

The bubbles are to remind you to cough and deep breathe every hour. The feathers are to remind you to move your legs every hour.

OR

One of us will come tickle your feet.

With love and wishes for a speedy recovery,
Carla, Becky, Linda, Debbie, Patty and Doris

She was so alert that day. Sick enough to have 2 nurses on duty just for her but still talking to us and giving us instructions. I said and really believed "I know you are going to be OK" and she said simply "I hope so" but she seemed unsure, she was still fighting but facing reality at the same time. I'm still confused, about life, about hope, about everything. We tried everything our combined faiths offered. We prayed, we tried positive thinking, we walked circles of protection around the hospital, and we still lost her, in her early 40s, one of the most loving women I've ever known.

EDS, or Ehlers-Danlos syndrome, is a genetic collagen disorder frequently involving fatigue, joint pain, exceptional flexibility, and numerous other symptoms. Once thought rare, it may affect as many as 1 in 5000 people, perhaps accounting for at least a small percentage of those diagnosed with Chronic Fatigue Syndrome or Fibromyalgia. It is usually a hidden disability until later in life, and as such, sufferers are prey to very considerable discrimination and contempt, often as much from their own families as society.

Paganini is believed to have suffered from this illness, and possibly the Canadian pianist Glenn Gould, whose appearance and so-called eccentricities are common for this illness.

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