Patient Comments: Marfan Syndrome - Symptoms

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

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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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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