The understanding of rare diseases is often lacking, making it difficult for rare disease patients to get the diagnosis and treatment that they need. Dr. Tracy M. French aims to change this for those affected by systemic sclerosis with a new website: TotalSSc.com. This site will bring attention to this disease, and it will also help medical professionals with treatment and diagnosis.
About Systemic Sclerosis
Systemic sclerosis is an autoimmune disorder caused by fibrosis of the skin and internal organs. Females are more likely to have this disorder than males, with symptoms appearing in the middle of life. These include fibrosis of the skin and internal organs, Raynaud’s phenomenon, heartburn, difficulty swallowing, swelling in the hands and fingers, calcium deposits under the skin, open sores on the fingers, diarrhea, high blood pressure, kidney problems, joint pain, shortness of breath, and issues with the gastrointestinal system. These are caused by an issue with the immune system that causes it to attack healthy tissue, although medical professional are unsure as to why this happens.
Multiple tests may be used to diagnose this condition, including blood tests, physical exams, X-rays, biopsies, echocardiograms, breathing tests, and CT scans. While there is no cure, treatment can address the symptoms. Doctors may prescribe blood pressure medication, drugs to help with fibrosis, immunosuppressants, pain medication, antibiotics to prevent any infections, and drugs to suppress stomach acid. They may also use surgery, occupational therapy, and physical therapy.
This website was meant to be launched at the Systemic Sclerosis World Congress, which was unfortunately postponed due to the COVID-19 pandemic. Despite the setback, it is up and offers education, news about any developments, and advice for treatment and diagnosis.
Individualized treatment is extremely important, as no two cases of systemic sclerosis present in the exact same way. Doctors should tailor their therapies towards the symptoms that their patients’ present. The website talks about therapies that are offered for common effects of this disorder, such as methotrexate for skin fibrosis, reflux medications for gastrointestinal issues, and cyclophosphamide for lung fibrosis.
The issue with treatment for systemic sclerosis is that it is often aimed at end-stage organ disease. This website recommends that doctors should consider more preventative treatments; the goal is to stop patients from ever reaching these end-stages.
Teamwork and education are also stressed on this website. Diagnosis for this disorder is often difficult to obtain because doctors are unaware of symptoms and presentation of systemic sclerosis. Education helps this issue, as does a team of specialists working together. Rheumatologists are often the best versed in this disorder, so when they are paired with other specialists, patients get the best outcome.
This website also focuses on clinical trials and ensuring that doctors are aware of all of the treatment opportunities for their patients. Although the current pandemic has made trials difficult, there are still many trials and developments in the world of systemic sclerosis. According to Dr. French, there are many reasons to be hopeful.
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