South Florida Hospital News
Saturday September 22, 2018
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March 2018 - Volume 14 - Issue 9

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Scleroderma Foundation: Education, Support, Research

"It just so happens that was one of the few things I knew," laughed Dr. Franck Rahaghi, recalling an incident that occurred while he was in medical school at the University of California San Francisco. One of the professors showed a patient in class and said the person had Raynaud's phenomenon in the fingers, and other manifestations, and asked if anyone knew what it was. "I was so happy I made a diagnosis of a rare disease."

That rare disease was scleroderma, an autoimmune disease whose symptoms often include sensitivity to cold in the extremities, thickening of the skin, shortness of breath, difficulty in swallowing, stiffness and pain in the joints, and damage to internal organs. Dr. Rahaghi's knowledge of the disease has had an impact on both his career and his service to others.
 
He became a pulmonary specialist and went to the Cleveland Clinic in Florida to start a pulmonary hypertension clinic. "It turns out a lot of scleroderma patients are at risk for pulmonary hypertension, and then I got involved in their lives in terms of taking care of their other diseases. Eventually we were seeing literally hundreds of patients with scleroderma, so we gathered a group of physicians in various specialties that have expertise in handling scleroderma patients, and listed our services with the Foundation because we were involved in research."
 
The "Foundation" is the Scleroderma Foundation, whose Southeast Florida Chapter is led by Executive Director Ferne Robin. She said its mission of education, support and research is extremely important, and funding is absolutely vital. "Not many doctors are familiar with scleroderma, so we're trying to raise funds in order to have more education and awareness events for the patients and the communities and the doctors. The Foundation also invests at least $1 million each year, on average, in cutting-edge research to discover, understand, and overcome the cause, symptoms, and disabilities of scleroderma."
 
The Foundation held its annual fundraising walk recently, although donations were down this year from last. Hurricane Irma had an impact and inclement weather held down the number of walk‑ups. "Financially it was not successful, but emotionally it was, and the whole spirit of it was extremely successful. We can't count everything in dollars, we have to count it in the impact we have on the people who suffer."
 
Robin is grateful for the efforts of people like Martin Lehmann, whose daughter passed away from scleroderma in 2007, and who has been involved with fundraising and support for the Foundation ever since. Lehmann, who lives in Key West, said after his daughter passed he was looking to do something for the Scleroderma Foundation, but didn't know about the Southeast Florida Chapter. "We weren't aware that it was there, and we were trying to put something together down here. A friend of ours did a Google search and found the Southeast Florida Chapter and found they did an annual walk, and we thought we should get involved with that."
 
Lehmann did his first walk in 2012 and has continued since then. He said that in addition to the annual walks, he has helped to organize fundraisers that include such items as hotel stays and private charter boats. "Key West is very involved and we've done very well. We take that up to the Southeast Chapter and they really appreciate what we do." He also joined the board in 2017. "When you're affected, you get involved," he said simply.
 
There is no cure for scleroderma, but as Dr. Rahaghi said, "In medicine there are very few things for which there is a cure. What we do is try to halt the disease and improve the patient's condition. One thing we tend to do is treat the patient more aggressively, because we're more aware of the up-to-date data, and new and experimental treatments."
 
While the symptoms may be difficult to recognize at first – skin tightness, coldness in extremities, shortness of breath, difficulty in swallowing – Dr. Rahaghi said that "unless you have a really subtle form of this condition, very soon you will be presented symptoms that are hard to ignore." He believes the problem has not been with diagnosis, but rather with the belief that little can be done for the patients.
 
Dr. Rahaghi pointed out that continuous incremental improvements have been made in understanding and managing scleroderma, but he has seen the lack of aggressive management by physicians, and the fact that once diagnosed, patients sometimes tend to ignore referral centers that may be available to provide the comprehensive and sometimes difficult care that they need.
 
Robin would agree – that's why funding for education and support is so important.

For more information, visit scleroderma.org or call (954) 798-1854.

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