Have not met, I hope you are okay
does anyone have marfans syndrome, or know somebody who does?
i want to know what their lives are like as I just got it today.
Thanks
Have not met, I hope you are okay
In general, it is important for the patient with Marfan syndrome to keep as fit as possible with gentle regular exercise. This improves muscle tone and is good for overall function of the heart and blood vessels, but any
exercise should be appropriate to each individual’s physical condition. Some activities are best avoided, such as long distance running and heavy lifting.
Advances have been made in the early diagnosis and treatment of Marfan syndrome. It's now possible for people who have Marfan syndrome to live longer and enjoy a good quality of life. Many people who have Marfan syndrome and are properly diagnosed and treated may live an average lifespan.
If you have Marfan syndrome, talk with your doctor about ongoing care and what types of physical activity are safe for you. If you're thinking about becoming pregnant, discuss the possible risks with your doctor.
While there is no cure for Marfan syndrome, treatment focuses on preventing the various complications of the disease. To accomplish this, you'll need to be checked regularly for signs that the damage caused by the disease is progressing.
In the past, people who had Marfan syndrome often died young. With regular monitoring and modern treatment, most people with Marfan syndrome can now expect to live a more normal life span.