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Lee Shapiro, M.D., FACP, The Center for Rheumatology, LLP, Albany, New York Robert Simms, M.D., Boston University School of Medicine Carol Feghali-Bostwick, Ph.D., Assistant Professor of Medicine, University of Pittsburgh Thomas A. Medsger, M.D., Jr., Gerald P. Rodnan Professor of Medicine at the University of Pittsburgh School of Medicine

 

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The Scleroderma Foundation Web site contains a wealth of information about all aspects of scleroderma. For your convenience, provided below is an index of the most frequently asked questions posed to our education and research department.

In addition to this index, you may also wish to review the Medical Articles.

Coping

  1. How do I cope with scleroderma?
  2. How do I overcome a chronic illness in the workplace?

Diffuse

  1. How often should a patient with diffuse scleroderma have checkups?

Esophageal Questions

  1. What can you tell me about "throat-stretching"?
  2. Is difficulty swallowing related to scleroderma and what can be done to help?

General Questions

  1. What is scleroderma?
  2. What is telangiectasias?
  3. Is it true that the effects of diffuse scleroderma start at the top of the body and travel down?
  4. How serious is scleroderma?
  5. How is scleroderma diagnosed?
  6. Who develops scleroderma, and when?
  7. What causes scleroderma?
  8. Is scleroderma genetic?
  9. What is the treatment for scleroderma?
  10. How can I find a physician who is knowledgeable about scleroderma?
  11. Is there a lotion or cream that will help with my skin tightness?
  12. Can persons diagnosed with systemic scleroderma donate blood?
  13. Should persons diagnosed with scleroderma receive flu shots?
  14. I have lost the padding on the bottom of my feet. How can I minimize the pain associated with this?
  15. What should I do to prepare if I'm traveling?
  16. Will breast implants be safe?
  17. Tell me about scleroderma of the middle and inner ear?
  18. When you have a positive ANA titer (concentration), can the pattern change, and if so, what does this mean? Is the pattern of the titer indicative of the disease you could develop?

Itchy Skin

  1. How do I take care of itchy skin?
  2. How do I treat scleroderma-related itching?

Limited

  1. Is Limited the same as scleroderma?

Lung Questions

  1. I have been told I have a symptom called pulmonary arterial hypertension. What are the treatment options for it? (This information has been provided courtesy of the Pulmonary Hypertension Association.)
  2. Frequently Asked Questions. (This information has been provided courtesy of the Pulmonary Hypertension Association.)

Morphea

  1. My 5-year-old daughter was diagnosed with morphea when she was 3. Is there a possibility her disease will go away some day?
  2. What is severe generalized morphea?
  3. What action can be taken to prevent generalized morphea from progressing?

Nutrition/Health

  1. Are there any ways to improve scleroderma symptoms by adopting a particular diet?
  2. Are there dietary restrictions for persons diagnosed with scleroderma? My friend was diagnosed with this disease and was advised to limit foods containing copper (liver, chocolate, prunes).
  3. What are some of the treatments for chronic anemia in scleroderma patients?
  4. Should I protect my skin from the sun more than before I had scleroderma?
  5. How should I care for my nails?
  6. Is hair loss associated with scleroderma?
  7. Should I exercise a little every day?

Raynaud's

  1. Questions and Answers About Raynaud's Phenomenon
  2. Raynaud's Phenomenon and Ulcerations (Question and Answer)
  3. I live in a cold climate. What can I do to manage my Raynaud’s during this winter season?

Scleroderma and Calcium Deposits

  1. What is calcinosis?
  2. Calcium deposits defined.
  3. Have there been any improvements to minocycline, or are there any alternatives to managing painful calcium deposits on ones fingertips?
  4. Will eliminating calcium from my diet minimize calcinosis?

Scleroderma and Dental Problems

  1. Is there any research on scleroderma affecting the dentin in teeth?

Scleroderma and Genetics

  1. Are there any current studies about the inheritance of this disease? I am a female with scleroderma, and I also have a sibling with scleroderma. I worry about my son.
  2. I am looking for answers as to whether there is a genetic/hereditary component to scleroderma. My 66-year-old husband died from CREST last year. I have a 37-year-old son, so of course I am concerned about the chance scleroderma could be inherited by him.
  3. Is the role of scleroderma in your genes or in your environment?

Scleroderma and Life Expectancy (Two Questions and Answers)

  1. What is the life expectancy of people with diffuse scleroderma?
  2. What is the life expectancy if you have scleroderma inside your body, that is not the diffuse kind of scleroderma? Could it possibly go into remission?

Scleroderma and Optional Surgery

  1. Are risks associated with lasik surgery for scleroderma patients

Scleroderma and Pregnancy

  1. How long after I'm diagnosed should I wait to get pregnant?

Silica Dust

  1. I'm wondering if we should be concerned about the silica gel used in drying flowers, and the silica packets found in vitamin bottles, shoe boxes, etc.?

Treatments

  1. How do I prevent/deal with skin ulcerations?

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