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Talking to Your Doctor About Scleroderma

You have a unique medical history. Therefore, it is essential to talk with your doctor about your personal risk factors and/or experience with scleroderma. By talking openly and regularly with your doctor, you can take an active role in your care.

General Tips for Gathering Information

Here are some tips that will make it easier for you to talk to your doctor:

  • Bring someone else with you. It helps to have another person hear what is said and think of questions to ask.
  • Write out your questions ahead of time, so you don't forget them.
  • Write down the answers you get, and make sure you understand what you are hearing. Ask for clarification, if necessary.
  • Don't be afraid to ask your questions or ask where you can find more information about what you are discussing. You have a right to know.

Specific Questions to Ask Your Doctor

About Scleroderma

  • Is it possible to determine which type of scleroderma I have?
  • What kind of symptoms should I immediately call you about?

About Treatment Options

  • What will my medications treat?
  • How long will the medications you’ve prescribed take to work?
  • How much improvement should I expect?
  • What kinds of side effect should I expect?
  • When should I call you about a side effect?
  • Are there interactions between my medicines?
  • Are there any new treatments for scleroderma?
  • Do you recommend that I participate in a clinical trial?
  • Are there any clinical trials from which I might benefit?
  • Are there any herbal supplements or complementary or alternative therapies that can help me?

About Lifestyle Changes

  • Are there any activities that I should change?
  • Can you recommend an appropriate exercise program?
  • Should I make any changes to my diet?
  • Can you recommend a program to help me stop smoking?
  • What can I do to continue my usual activities and protect my hands and feet?
  • What can I do to continue my usual activities and protect my skin?
  • Are there local support groups I can join?

About Your Outlook

  • How will it affect my life?
  • Is it possible to predict the course my condition will follow?
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References:

Localized scleroderma. EBSCO DynaMed website. Available at: http://www.dynamed.... Updated June 4, 2013. Accessed November 29, 2016.
Scleroderma. National Institute of Arthritis and Musculoskeletal and Skin Diseases website. Available at: https://www.niams.nih.gov/Health_Info/Scleroderma/default.asp. Updated August 2016. Accessed November 29, 2016.
Systemic sclerosis. EBSCO DynaMed Plus website. Available at: http://www.dynamed.com/topics/dmp~AN~T116347/Systemic-sclerosis. Updated June 9, 2016. Accessed November 29, 2016.
Tips for talking to your doctor. Family Doctor—American Academy of Family Physicians website. Available at: https://familydoctor.org/tips-for-talking-to-your-doctor. Updated May 2014.
What is scleroderma? Scleroderma Foundation website. Available at:
...(Click grey area to select URL)
Accessed November 29, 2016.
Last reviewed November 2016 by Michael Woods, MD
Last Updated: 5/20/2015

 

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