Give Mary the medical treatment she requires.
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As a friend, I have watched Mary and her family struggling for years not only with Ehlers-Danlos Syndrome (EDS), but with a never ending struggle to get her care that she needs. Mary Weisberg is the wife of a career active duty officer. The whole family receives their medical care at the state of the art Walter Reed Military Medical Center, formerly National Naval, in Bethesda, MD. This is the President’s hospital. She is continually denied care, unbelievably, for her rare disease at this hospital. She needs to be allowed to see an outside Ehlers-Danlos specialist for surgery to correct her spinal injuries now, and Walter Reed must be made to correct how it treats EDS patients in the long run.
Mary has a rare genetic disorder; a form of Ehlers-Danlos Syndrome. She and her son were born without the DNA the connective tissues in the human body strong. People with the Ehlers-Danlos suffer from fragile joints that dislocate easily, from blood vessels and organs that rupture, inability to regulate their blood pressure, the may need to be tube fed. They become disabled. They may die. For Mary, she suffers profoundly from the fragile joints of EDS. Joint fragility is measured on a 9 point scale; she scores a 9. There are many mornings I see on Facebook that she will not be able to get out that day because she rolled over in bed the night before and dislocated a shoulder. A few years ago she dislocated her neck and had a six hour surgery to fix it
As if living like this weren’t hard enough, this family has to fight to get her health care. At Walter Reed, EDS is controversial. It’s not a controversial disease. It has been described in medical textbooks for 100 years. They have identified many of the genes that cause it. The former Head of Spine at National Naval, Dr. Fraser Henderson, is now a lead researcher on helping EDS patients and heads EDS charities. Just this year, a worldwide symposium of EDS doctors updated best practices and clinical guidelines on helping this patients with 18 new publications. All this, and the Weisberg family at Walter Reed cannot benefit. Walter Reed recognizes none of it.
The level of medical tragedy I’ve seen this family go is heartbreaking. They have insurance because her husband is an active duty officer. In the last few years, I’ve watched as they lost a baby at 40 weeks of pregnancy because they “didn’t know” they should be doing anything for. After that, they still denied her extra care in another pregnancy. She’s walked around with a shoulder that wouldn’t stay in the socket, with a damaged pelvis they wouldn’t fix, with vomiting, with losing weight, with a neck that was dislocating. They’ve told her that her symptoms are too unusual to be real and EDS can’t be the reason for them. Her non-military EDS specialists disagree.
Mary has been trying to get help with two of her neck vertebrae for a year and a half. According to two EDS specialists, this surgery is badly needed. They also say that she needs an operation to detether her spinal cord, as she’s had the symptoms of Tethered Cord Syndrome her whole life. The surgeons at Walter Reed will not release her from care there for the operations and won’t do it themselves. The surgeon who would do the surgery is covered by military insurance and is ready to go. Walter Reed, according to the doctors trained there, teaches its doctors that EDS is benign, that my friend shouldn’t even be sick. The people stopping the surgery say that there can be no such thing as an Ehler-Danlos specialist, and no doctor can have a more informed opinion than any other on EDS. There is no need. This is even though their own former Head of Spine is one of the most respected EDS specialists in the world. Mary has seen him. He is one of the doctors recommending her surgery.
My friend Mary is sick with a real disease. EDS is real. I don’t know why it’s controversial at this one hospital. Please sign this petition asking that Congressman Jamie Raskin and Senator Van Hollen of Maryland speak to Capt. Mark Kobelja, Director of WRNMMC and Capt. John Rotruck, WRNMMC Chief of Staff on this matter. We ask them to demand that Mary’s case be released immediately to the civilian doctor. We further ask them to review the WRNNC and USUHS medical practice and knowledge on the Ehlers-Danlos Syndromes and demand that up to date standards of practice be instated as mandatory from the top down to improve patient care.
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