South Florida Hospital News
Sunday September 22, 2019
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May 2018 - Volume 14 - Issue 11

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21st Scleroderma Patient Education Day

Individuals who are affected by scleroderma can learn about their disease and about helpful strategies for living and caring for someone with a chronic illness at the 21st annual Scleroderma Patient Education Day, June 2, 2018, from 10:30 a.m. to 2 p.m. at the Marriott Pompano Beach Resort & Spa, 1200 North Ocean Boulevard in Pompano Beach.

The event includes lunch and is open to all who are affected by scleroderma and is hosted by the Southeast Florida Chapter of the Scleroderma Foundation.
 
Attendance is free for individuals who have scleroderma and for their family members. There is a $25 fee for others who wish to attend. Online registration is available at https://patienteducationday2018sefl.eventbrite.com.
 
Hosted by the Scleroderma Foundation Southeast Florida Chapter and sponsored in part by Actelion, a Janssen Pharmaceutical company of Johnson & Johnson, the day includes three guest speakers who are experts in the field.
 
Most notable is Virginia D. Steen, M.D., professor of medicine at Georgetown University Medical Center in Washington, D.C.
 
Dr. Steen is recognized internationally as a leading expert in scleroderma and has made numerous contributions to understanding the epidemiology and natural history of systemic scleroderma (also known as systemic sclerosis). She currently serves as chair of the Scleroderma Foundation’s Medical & Scientific Advisory Board, of which she has been a member for many years.
 
Also presenting during the workshop are Melanie McMillion, a licensed mental health counselor, and Jessica Massengale, a patient advocate. McMillion and Massengale will discuss the psychological aspects of scleroderma and helpful strategies for living and caring for someone with a chronic illness. The needs of caregivers will also be addressed.
 
Scleroderma is a chronic disease that affects the body’s connective tissue. Generally classified as an autoimmune rheumatic disease, it is characterized by an overproduction of collagen (fibrosis), which causes hardening of the tissue and damages organs. Commonly known to affect the skin, which is how the disease was named (sclero means hard; derma means skin), scleroderma also affects the internal organs and can be fatal.
 
There are several types of scleroderma: localized scleroderma, also known as morphea, systemic sclerosis (SSc), which is much more damaging, and en coupe de sabre, a classic form of scleroderma that produces a dramatic scar across the face.
 
All forms of the disease can cause severe pain and can produce complications that rob a person of function. The cause of scleroderma is not known, although there are many clues including genetic predisposition. Fibrosis, the overproduction of collagen, is at the heart of the disease, which makes it prototypic for all other fibrotic diseases.
 
The Scleroderma Foundation Southeast Florida Chapter provides support and education programs for individuals affected by scleroderma, while raising funds for research to discover the cause, understand the mechanism, and overcome the symptoms of the disease.
 
There are 20 chapters of the Scleroderma Foundation across the United States engaged in a great undertaking to help people affected by scleroderma.

Connect with the Foundation online at www.scleroderma.org. For additional information, please contact Ferne Robin at (954) 798-1854 or by email, sclerowhat@gmail.com.

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