My daughter has been diagnosed with Ehlers-Danlos Syndrome (EDS). This is a birth defect that affects more people than Cystic Fibrosis or MS, but most people – including, unfortunately, most in the medical community – have never heard of EDS. We are working hard to raise the national awareness of this condition. EDS is a connective tissue disorder that presents itself in six major “types.” One thing that is so insidious about EDS is that it generally affects girls at the onset of puberty. (Men don’t get affected until later in life – the presence of testosterone inhibits EDS’s development). Basically, her tendons and ligaments are like old, over-stretched rubber bands; they don’t stay sufficiently tight to hold her joints in place. This causes chronic pain, along with easy and frequent bone displacement. My daughter's first experience with the disorder was when she dislocated her shoulder at age 14; she was ultimately operated on two years later to tighten her tendons to keep the thing from dislocating continuously. The disease has continued to weaken her, and she spent much of 2013 in a wheelchair. Fortunately, she is being helped with pain treatments and physical therapy, but her physical condition continues to go up and down. She was operated on earlier this summer in response to a dislocation of her ankle. EDS also causes “bad sleep” (no REM). This results in chronic fatigue and consequently depression. My daughter and people like her also do not absorb pain medication effectively. This medication actually passes through their bodies so quickly that, 20 minutes after taking the medicine, there is no residue in the body. Because this condition is not widely known yet in the medical community and the victims are commonly adolescents, doctors generally don’t believe them regarding their level of pain and the amount of pain medicine needed. Often, physicians think EDS sufferers are just seeking recreational drugs. As you can imagine, besides being very painful, it is very frustrating when your own doctor doesn’t believe you and lumps you in with drug addicts. As you know, it is very sad and frustrating for the loved ones of EDS victims to watch as they undergo deterioration of their bodies, coupled with ignorance, apathy, doubt, or mistrust by those on whom they must rely for medical support. I will not stand by helplessly watching my child and others suffer needlessly. My first attempt to raise awareness of EDS occurred on August 19, 2014, when my employer, Ferenczy Benefit Law Center LLP, took the Ice Bucket Challenge on behalf of the Ehlers-Danlos National Foundation (EDNF). I started this page to let everyone know what I am doing and what I will be doing to help in whatever small way I can. Further, I'm soliciting donations on behalf of EDNF. The address of EDNF and a link to its website will appear shortly on this page, along with other important information about EDS. Please know that we are not an EDS support group. There are several around the country, including one in my hometown in Atlanta. EDNF supports our efforts fully. We are not soliciting contributions directly and are in no position to accept direct donations; please send any contributions to
1760 Old Meadow Road, Suite 500
McLean, Virginia 22102
I want to thank my family, friends, and colleagues for the support that they have shown and will show these efforts. While you may think that my efforts or your efforts are just one person's activities and are a drop in the proverbial ice bucket, I want to share one of my favorite quotes. It is from The West Wing's president, Josiah Bartlett:
"DON'T EVER BELIEVE THAT A FEW DEDICATED PEOPLE CANNOT CHANGE THE WORLD, AS IT IS THE ONLY THING THAT EVER HAS."
