Before the appointment make a list of questions during the meeting (and all that follow, including phone conversations) take notes to record the doctor’s responses and any information you want to remember. Scleroderma “is different from lupus or rheumatoid arthritis, which are often treated the same way through a hierarchy of medications.” With scleroderma, he says, your treatment plan will be “custom-made based on what your needs are.”Īs you discuss your unique diagnosis and symptoms with the expert, you have the opportunity to become a proactive patient. “No two scleroderma patients are going to be the same,” Dr. This conversation is critical because with the scleroderma diagnosis you have become a “snowflake”-the word patient Mariann Boyanowski chooses to capture the unique way scleroderma appears in each patient. If your local primary care physician is less familiar with scleroderma, you can still benefit from the knowledge of an expert working in a larger research setting: patients often travel to a center where experts specialize in scleroderma to formulate a care plan and then return once or twice a year to update their treatment plan their local physician consults the expert between visits as needed.Īrmed with some basic knowledge, you are ready to schedule a follow-up appointment for a candid dialogue with the expert. It’s good if the doctor practices close to your home, better if he or she is part of a group that can work with the different organs scleroderma can affect, and best if the group is associated with a research university or scleroderma center. Second, find a doctor-ideally a rheumatologist-who has expertise and experience dealing with scleroderma. Even if you have a more severe form involving major organs, treatments can manage most symptoms. A milder form of the disease does not necessarily shorten one’s normal life span. Scleroderma is “not automatically a death sentence,” says Dr. If you do search for information and find statistics or firsthand accounts that frighten you, don’t panic. You will encounter worst-case scenarios, as well as incorrect information. Many of the body’s internal organs can be damaged in this form, and it can become life-threatening.įirst, as tempting as it may be, do not randomly roam the Internet for information. The diffuse form of the disease is the most severe and affects one-third of the patients with systemic sclerosis, according to Dr. More-serious complications, such as pulmonary hypertension, can develop later. This form may be referred to as CREST syndrome, named for its common symptoms: calcinosis (hard, often painful calcium deposits in the skin) Raynaud’s phenomenon esophageal dysfunction sclerodactyly (tightened skin on the fingers) and telangiectasias ( red spots on the skin). Chatterjee says that two-thirds of patients diagnosed with systemic sclerosis will have the more benign, limited form. Systemic sclerosis is the more serious variety, which can present in two forms: limited and diffuse.ĭr. Progression may stop even without treatment. In localized scleroderma, the mildest variety, usually only a few places on the skin are affected. There are two main types of scleroderma: localized scleroderma and systemic sclerosis.
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