My wife, Edith Gordon, was originally diagnosed with systemic scleroderma in 1992. However, she has severe intestinal problems which dated back to the late 1970s. In 1984 she was diagnosed as having intestinal pseudo obstructive disease which led to numerous hospitlizations starting in 1985 and covering a wide range of problems from dehydration to severe anemia and electrolyte problems.

Since 1986, Edith has been taking IVs at home because she was continuously getting dehydrated. In the late 1980s she lost a considerable amount of weight and at 5' 6" her weight got as low as 73 pounds. Her doctor put her on TPN (this is intravenouse feeding which contains mostly dextrose and it enables a person to get calories intravenously because they are unable to digest foods in a normal fashion). She did this for about a year but fortunately was able to stop because she was able to gain weight back on her own by just eating.

She first became aware of scleroderma during an office visit to her gastroenterologist at the end of 1992 when he noticed that her fingers were bent. He immediately suspected that she might have scleroderma and that it may have been the underlying problem that she had all those years which until that point went unnoticed. He immediately ordered an ANA blood test which came back positive. After these results came in, Edith was referred to a rheumatologist who did another ANA in his office and the results once again were positive.

At this point it became very obvious that Edith had scleroderma and that her intestinal problems were definately a part of the disesae. Over the next few years she started developing more and more problems. In the summer of 1994, she developed an ulcer on one of her fingers. This led to visits to different doctors, none who really knew how to treat the problem. As a result of this, she developed a staph infection which led to a five day hospitilization which eventually led to bone fusion surgery on that finger.

Following this ordeal, she has once again lost over thirty pounds; she also became severely anemic and has since developed ulcers on at least five other fingers and under both of her elbows. She has been to many different doctors and for the most part these doctors have been a waste of time.

The only descent doctor she has been to is Dr. Virginia Steen, a rheumatologist, who used to work at the University of Pittsburgh under Dr. Thomas Medsgar, who now practices at Georgetown University Medical Center in Washington,D.C. Dr. Steen works exclusively with scleroderma patients; she is an excellent doctor and is one of the most compassionate human beings you will ever find. With all of the medical problems that Edith has been having I will probably take her back to Dr. Steen, eventhough she is 300 miles from where we live.

This past week, Edith was hospitilized in a local hospital for an intestinal blockage which was causing extreme difficulty for her breathing. The care she got in this hospital was appalling and the doctors who treated her no absolutely nothing about this illness and have put us through a living hell. I contacted Dr. Steen and may have to make arrangements to bring Edith down to Washington, D.C. so that she gets the care that she so desperately needs.

It is so important that anyone with this disease have a doctor who is competent, caring and responsible and will make every attempt to treat this disease aggressively and not allow the care to be compromised by money which is what we have found. We are part of an HMO and what I have seen of the so-called primary care physicians is a disgrace. They make medical decisions that are only interested in saving dollars and don't have any knowledge or interest in scleroderma.

If you want to contact me, my E mail address is as follows: MWeinst678@aol.com

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Copyright © 1997 Mark Weinstein