Marfan Syndrome - Symptoms

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What symptoms do you experience with Marfan syndrome? How do you cope with them?

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What are the symptoms of Marfan syndrome?

Marfan syndrome affects different people in different ways. Some people have only mild symptoms, while others are more severely affected. In most cases, the symptoms progress as the person ages. The body systems most often affected by Marfan syndrome are:

  • Skeleton. People with Marfan syndrome are typically very tall, slender, and loose-jointed. Because Marfan syndrome affects the long bones of the skeleton, a person's arms, legs, fingers, and toes may be disproportionately long in relation to the rest of the body. A person with Marfan syndrome often has a long, narrow face, and the roof of the mouth may be arched, causing the teeth to be crowded. Other skeletal problems include a sternum (breastbone) that is either protruding or indented, curvature of the spine (scoliosis), and flat feet.
  • Eyes. More than half of all people with Marfan syndrome experience dislocation of one or both lenses of the eye. The lens may be slightly higher or lower than normal, and may be shifted off to one side. The dislocation may be minimal, or it may be pronounced and obvious. One serious complication that may occur with this disorder is retinal detachment. Many people with Marfan syndrome are also nearsighted (myopic), and some can develop early glaucoma (high pressure within the eye) or cataracts (the eye's lens loses its clearness).
  • Heart and blood vessels (cardiovascular system). Most people with Marfan syndrome have problems associated with the heart and blood vessels. Because of faulty connective tissue, the wall of the aorta (the large artery that carries blood from the heart to the rest of the body) may be weakened and stretch, a process called aortic dilatation. Aortic dilatation increases the risk that the aorta will tear (aortic dissection) or rupture, causing serious heart problems or sometimes sudden death. Sometimes, defects in heart valves can also cause problems. In some cases, certain valves may leak, creating a "heart murmur," which a doctor can hear with a stethoscope. Small leaks may not result in any symptoms, but larger ones may cause shortness of breath, fatigue, and palpitations (a very fast or irregular heart rate).
  • Nervous system. The brain and spinal cord are surrounded by fluid contained by a membrane called the dura, which is composed of connective tissue. As someone with Marfan syndrome gets older, the dura often weakens and stretches, then begins to weigh on the vertebrae in the lower spine and wear away the bone surrounding the spinal cord. This is called dural ectasia. These changes may cause only mild discomfort; or they may lead to radiated pain in the abdomen; or to pain, numbness, or weakness in the legs.
  • Skin. Many people with Marfan syndrome develop stretch marks on their skin, even without any weight change. These stretch marks can occur at any age and pose no health risk. However, people with Marfan syndrome are also at increased risk for developing an abdominal or inguinal hernia, in which a bulge develops that contains part of the intestines.
  • Lungs. Although connective tissue problems make the tiny air sacs within the lungs less elastic, people with Marfan syndrome generally do not experience noticeable problems with their lungs. If, however, these tiny air sacs become stretched or swollen, the risk of lung collapse may increase. Rarely, people with Marfan syndrome may have sleep-related breathing disorders such as snoring, or sleep apnea (which is characterized by brief periods when breathing stops).
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Comment from: Matty, 45-54 Female (Patient) Published: January 30

I was diagnosed with Marfan syndrome as an infant as my father (now 83 years old) had it and knew in his teen years! He, my only sibling, and I have had the dislocated lenses. One of my most life changing events was finding an ophthalmologist when I was in my mid-30s who could remove my lenses and sew new ones in. I went from so-so (ok, pretty darn poor) vision to 20/20! My brother and my father have also had this surgery. My dad has had his aorta fortified and a new mitral valve put in when he was in his late 70s. I thankfully show no real signs of aorta dilation or valve prolapse but I am taking atenolol and now losartan prophylactically. Now that I am in my 50s my issues seem to be more skeletal. I have really bad scoliosis of the spine and my pelvis is out of whack which causes really great pain in my hips and back. I never attributed this to Marfan until I was reading tonight. Fortunately a round of chiropractic visits seems to really have helped; that and giving up running and doing more swimming and piking. I'm not fast but I am dedicated!

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Comment from: Judy, 55-64 Female (Patient) Published: February 04

Now 55 or 56 I got a name for what hurts me so. My symptoms for Marfan syndrome are hyper flexibility and extraordinary skeletal pain, to include but not limited to, leg, feet, hip and tail-bone; my calf muscles harden to rock and drop me with pain. I have flat feet; ankles that are not formed. My ankles appear rubber. I can put my legs straight together and my feet flat together. I can keep my feet flat together and bend my knees. I can draw my feet still flat together to my pelvis keeping my legs and knees flat on the floor to their respective sides. My hips have always dis located when I ran. I do not have the long limb appearance. Both sides of my family are very short. Some 4'6 I am 5'. I asked doctors of all types all my life, what it was. I got an answer finally yesterday that Marfan was suspected. Finally a road to examine! Along with flat feet and rubber ankles I also had a speech impediment as a child I stuttered and could not say "R's". I appeared what the term then was retarded and malformed. Born in 1958, I was avoided by children and adults because of all this appearance. Family history indicates symptoms. Father died at 42 of heart attack. Sister 53, had heart attack. Both kept saying extraordinary skeletal pain was not addressed when they consulted doctors. I have the same experience. Father's mother had the extreme flexible muscles. She was obese and could put both her palms on the floor with ease while standing. She also had all the eye problems listed. Detached parts of her eyes and cataracts. She had stomach issues also. My Father had multiple heart attacks and died from a heart attack. My sister died at 53. She was the most active in searching for skeletal pain. She was dismissed as an obese smoker, 4'8. She also had cancer. My Mother also had heart attacks she too has passed away. My remaining sister just got a stent in her heart. She was admitted for lung problems shutting down her breathing. My dead sister went through stents at least twice. We are not as close as most families want to be to know additional symptoms. My niece has extreme foot trouble and my grandson does as well. Grandson had knotted intestines as a baby. I do not know if it is related. One child was born to my remaining sister, with bowels outside.

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