Living With Marfans

MARFAN AWARENESS & ACTION by Mark Rosenthal
(Mark is a fellow marf and supporter.)

It is very important that you speak to the right people. Having Marfans today, is a lot better then it use to be in the past. These days its just a change of life style, but you have just about a normal life. It's very important that you do your research, and make sure that you change your life style. Such as, no more contact sports. You want to try and keep your heart beat under 100 at all times, which a drug called beta-blocker will do. It is important to note, I'm not a Doctor, and every marfan is different. No case is the same.

A link to the Marfan Foundation - www.marfan.org -1-800-8-marfan ext.126 and speak to Amy Kaplan, RN-Manager-Marfan Foundation's Information and Resource Center, would be a free expert on marfans for you to talk with. If you email support@marfan.org they will send you a free kit telling you more about marfans. You must do this, its very important.

If you email to marfan-list-subscribe@marfan-list.org it will add you to an email support group of over 3,000 people who have marfans.

It is important that you find the right doctor. Make sure to check out what your health insurance covers and what their procedures are for payment. Most of the time, with companies that give you an HMO, you must have a referral from your primary doctor.

It is also very important that you tell your family the truth. They need to know everything that you know.

People that don't know they have marfans or don't do what they are told to do with having marfans, are more likely to get in trouble.