Marfan Syndrome People

Marfan syndrome affects real people! It is not just some unknown disease

. Those who have Marfan syndrome and those who live in close relation to someone who is affected understand the face of the syndrome, rather than just the symptoms and treatments.

Famous people believed or known to be affected by Marfan Syndrome are Abraham Lincoln, Akenathen (Egyptian Pharao), Charles de Gaulle, Sergej Rachmaninoff, Niccolo Paganini, Joey Ramone (singer).

Challenges

Those who suffer from Marfan syndrome often feel alienated, alone, and like somewhat of an outcast. This is for several reasons. One reason is that with the very long limbs and digits on both the hands and the feet, as well as the sometimes severe overbite and crowded teeth, children and adults are teased and stand as the brunt of many pranks, making them feel alone or outcast. Another reason is that Marfan syndrome strictly limits the amount of physical activity the person can do. Those children who cant play contact sports or participate in any physical activity that might put stress on the heart feel as if they are being robbed of their childhood, and dont necessarily fit in with their friends that are doing these things. Some people with Marfan syndrome are on medication to lower the heart rate and that alone makes them feel as if they are different and unpleasantly unique.

Epidemiology

Studies have shown that the only real ways to be affected by Marfan syndrome are either to inherit it from parents or to have a spontaneous genetic defect that results in MFS. The disorder does not favor one sex over the other, and does not seem to discriminate based on race or ethnicity either. The region of the earth people live in has no effect on the occurrence either, making Marfan syndrome a completely non-discriminatory disorder. Around one out of every 5000 people have Marfan syndrome, though it is still considered a fairly rare disorder.

Help and Support

Support for the challenges that those who suffer MFS endure and help with everything from information to medical bills is available from several different sources. There are a great number of national and international support organizations that offer anything from information to the latest studies and experimental medications, to therapy and counseling. Some support organizations offer medical help for those who are considered low income but have a great number of medical bills due to the surgery and medication MFS often requires. Other forms of support, and perhaps the most consistent and reliable, is that of close friends and family. These people can offer love, an ear to listen, money to help with bills, and if its simply their empathy for the problems those affected are facing.

by: Susan Meyer

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