Find a doctor
If you suspect that you or a family member may have Marfan syndrome or a related disorder, the first thing to do is find a doctor who is knowledgeable about the condition.
Ideally, look for a medical geneticist, a doctor who specializes in genetic conditions such as Marfan syndrome. A second choice is a cardiologist (heart doctor). Make sure the cardiologist has treated people who have Marfan syndrome and related conditions.
You can find a doctor by:
- Contacting our Help Center at 800-8-MARFAN (800-862-7326), ext. 126, or support@marfan.org
- Requesting our coordinated clinic directory
- Utilizing the National Institute of Health’s (NIH) physician locator to find a knowledgeable geneticist or cardiologist in your area
- Making an appointment with a geneticist at a university hospital
- Asking your primary doctor for a referral
- Calling the doctor referral service at your local hospital
- Calling your insurance provider
Compile a health history
Then, compile a health history of you and your family. We created a Family Health History Packet that you can fill out and save to your computer for regular updating. In addition, the U.S. Department of Health and Human Services offers an internet-based family health history tool that also may be helpful. These resources ask you about:
- Your past illnesses, operations and hospitalizations
- Medications you are taking
- Reasons why you think you might have Marfan syndrome
- Family members who have, or might have, Marfan syndrome
- Family members who have died of heart problems
Reach out for support
If you think you or a family member may have Marfan syndrome or a related disorder, this can be a scary time. The Marfan Foundation is here for you, please contact us.
- We offer phone and online support groups for families coping with Marfan syndrome and related disorders. Email us to find out how.
- Our active volunteer network provides social support for families who are dealing with Marfan syndrome and related disorders.
- Our Facebook page and our online community offer an opportunity to connect with others affected by these conditions 365 days per year.