My sister turned 49 years old today. Last year after 5 years of trying to
find out what is wrong she was finally diagnosed with systemic scleroderma.
This is after she has has a pacemaker, hysterectomy, colostomy, rectum removed
and her colon/small intenstines blockage around stoma. Each time she has come
out of these surgries weaker and weaker. (surgeries started in May 2009 and
last one was in Feb of this year) She has coded on the table twice and they no
longer will put her to sleep and the last two surgeries were done with a
epidural. Please tell me there is someone close to us that will and can help
her out. If we don't get any intervention I doubt she will make it to her 50th
birthday. She lives in Greensboro, FL about 30 minutes from the State Capital
in Tallahasse. Any and all help and references you can give would be greatly
appreciated. She is being taken care of by my 70 year old parents. She looks
like death not even warmed over. She is just skin and bones and it is killing
us to see her so weak and sick. Please, please advise of the best place to seek
advice for her. I was born on her birthday 4 years later and I am not ready to
loos my birthday sister!
With all my heart hoping you can give me some good information!
DR. C. ANSWERS:
I am sorry your sister, you and your family are going through this.I think the best Scleroderma Center is Johns Hopkins Medical Center. www.hopkinsscleroderma.org Director, Fredrick Wigley MD (MD from University of Florida)
Clearly trying to locate a local physician that has some experience with Scleroderma is important-
suggest: Contact Scleroderma Foundation and see what the nearest support group is to you. Contact them and ask for physician reccomendations locally. In doing some research on the web-I found the Southeast Scleroderma Foundation (Florida Chapter )with a good website and phone contact - 954.255.8335-perhaps they could make some referrals in your area. Tallahassee appears to have several large medical centers. One Rheumatologist was listed as affiliated with Tallahassee Memorial Care and he is Dr. Sarwar, Tallahassie Primary Care Association, Rheumatology training - Louisiana State (2004).
I have no way of knowing how much experience he has with Scleroderma patients, but most Rheumatologists are trained to manage Scleroderma, but since it does not occur that frequently in severe form, it is best to have input from a Specialty Center-especially in severe cases like your sister's.
Hope this is some assistance to your family's search, and
Happy Birthday to you both!