Marfan's syndrome. A personal perspective

Marfan's patients share the same problems as anyone with a lifelong, progressive, hereditary condition. The more knowledgeable an individual is about his disease and the more willing he is to accept the responsibility for his own well-being, the more control he has over his life. Medical and life insurance is not a luxury, but an absolute must. The need for stable insurance coverage impacts career decisions. Medication is a lifelong necessity; the patient must know what medications he takes, for what purpose, and the side effects. For patients with a cardiac prosthesis, most physicians recommend a regimen of prophylactic antibiotics before dental work or any invasive procedure. It is the responsibility of the patient to do this. Craig has cancelled dental appointments because he has forgotten to take antibiotics. Craig also takes an anticoagulant because of his prosthetic valve and fears being in a major accident and bleeding to death. Because of human body contains large amounts of connective tissue, a Marfan's patient will continue to develop problems; hernias, eye problems, joint problems, and further cardiovascular complications are all possibilities. Being realistic and maintaining a positive attitude are important in effective planning and dealing with continued adversity.