While these photos may be somewhat disturbing they are not in any way!! meant to evoke 'sympathy', THEY ARE  PORTRAYED FOR a reason. When I was a kid people would say 'ewwh', what ARE YOU  DOING?? & I DID NOT REALIZE that anything was 'amiss'. I could even, what's known as ,'wing my scapulae aka shoulder joints...i.e. when stretching arms behind neck I'd go all the way down to mid shoulders etc. ....THESE BECAME KNOWN AS MY "circus girl party tricks" but things that ultimately as I now age, really degenerate the joints  way faster & badly. NOBODY COULD EVEN DIAGNOSE EDS (and MARFAN) back then,  as it's so 'rare'  so, as we all learn more it becomes tho' still rare, not so much as more & more are diagnosed!

<THESE TWO PICS >

& some captions WERE FROM ORIGINAL  'THE ONLY THING ABOUT BEING IMPERFECT"  SO I THOT THE TITLE  THEN WAS KINDA' 'HIDING' THE TRUTH IN A FUNNY WAY,,,NOW I BELIEVE THIS WEBSITE IS A  GREAT TOOL TO TELL A STORY (AS IT'S MANDATE SAYS) AND TO HELP OTHERS AS Welshchick did with THE MARFAN syndrome and her dear "Mohammey"

** IMPORTANT TO NOTE EDS PERSONS MUST HAVE HEART ECHOCARDIOGRAMS EVERY 3 YRS.**

 AS THEIR ORGANS TOO HAVE THE DEGENERATIVE FAULTY COLLAGEN ISSUES ESPECIALLY AS WE AGE ...AGAIN, THERE IS NO CURE NOR IMPROVEMENT POSSIBLE AS YET; ONLY SYMPTOM TREATMENT!  <3 xo Patty

Symptoms vary in severity, even within one sub-type, and the frequency of complications changes on an individual basis. Some individuals have negligible symptoms while others are severely restricted in their daily life. Extreme joint instability and scoliosis may limit a person^s mobility. Most individuals will have a normal lifespan. However, those with blood vessel involvement, have an increased risk of fatal complications.

EDS is a lifelong condition. Affected individuals may face social obstacles related to their disease on a daily basis. Some people with EDS have reported living with fears of significant and painful skin ruptures,, their condition worsening, becoming unemployed due to physical and emotional burdens, and social stigmatization in general.

Constant bruises, skin wounds, and trips to the hospital take their toll on both affected children and their parents. Prior to diagnosis parents of children with EDS have found themselves under suspicion of child abuse (and/or hypochondria.)

Some people with EDS are not diagnosed until well into adulthood and, in the case of EDS vascular type,(and other worsening/aging types) occasionally not until after death due to complications of the disorder.

PLEASE CLICK THE LINK AND SEE ALL TABS IN THE .ORG SITE FOR MORE INFORMATION!

v v

http://www.ehlersdanlosnetwork.org/mysterydiagnosis.html

EHLERS-DANLOS SYNDROME- A SUB-TYPE/GROUP OF MARFAN SYNDROME

MY MAIN EFFORT SINCE DIAGNOSIS 10 yrs. ago, WAS TO MAKE WAY MORE PEOPLE AWARE TO KEEP THE CHILDREN OF THE NEXT GENERATION SAFE AND AWARE AND WATCHFUL AS HAS 'Rhonda' WELSHCHICK with her first tab about dear Mohammad who lived LARGE until passsing at age 30. She expressed interest in putting in a link about EDS but I do not think her grieving makes that appropriate now...

 The Marfan Syndrome / Ehlers-Danlos Syndrome Clinic at Cincinnati Children's Hospital Medical Center is an integral part of the Heart Institute's premier services to treat cardiac-related illnesses. This multidisciplinary clinic is a leader in the evaluation, diagnosis and management of adults and children suspected of having either Marfan syndrome or Ehlers-Danlos syndrome connective tissue disorders.