Comment from: Trinh Nguyen, 45-54 Female (Patient)Published: August 11
Since I was 12 years old, I found that I was always taller than my classmates. I had long legs and arms. I also had nearsightedness, but I studied well in class. After graduating from college, I had an ache in my left eye because of a dislocated lens. It was then that I found out that I had Marfan syndrome. Two years later, I continued to have eye problems with my right eye. Now, in my 40s, I still feel well, but my heart rate has slowed down to about 60 beats per minute.
Comment from: 25-34 Male (Caregiver)Published: April 02
My husband is 31 and was diagnosed with Marfan syndrome at age 5. He had an aortic dissection at age 28 and had surgery to replace the upper part of his aorta and repair his valve. Just three months ago, he had surgery to replace the abdominal section of his aorta. These were huge surgeries with many risks, but they went well, and he is doing great.
Last week, we gave birth to our first son. Knowing there's a 50% chance of passing on the disorder, we were anxious to find out if our son had it. So far, he doesn't appear to have any of the characteristics of the disorder, and we are so grateful.
Comment from: Daisy, 7-12 Male (Caregiver)Published: August 25
his spine, plus curvature that was discovered last year. She mentioned he was very tall for his age. He's 5.8' and thin. I explained to her he grew about 4 to 5 in. last year along with developing these weird problems. One leg is longer than the other, the orthopaedic doctor said his ligaments are too loose. He's always been double jointed and I never thought it would ever be a problem. So many doctors/specialists and no one has ever mentioned anything until now. The pulmonary specialist mentioned Marfan syndrome. What a shock! I was okay until I got home and did research I've been crying since then. I don't know how to feel, but he's going to get an Echocardiogram next month. I pray that his heart comes out okay. I wish this would have been made known to me sooner.
Comment from: Female (Patient)Published: August 25
I am a girl of 17 years. I was diagnosed with Marfan's syndrome at the age of 11. At that very young age I could not take it so easily and I would cry over it everyday. I inherited this from my father, who inherited the same from his father. I am tall with a slim body. My arms, my fingers and my toes are longer than that of any other normal person. And the lenses of both my eyes are dislocated. I have undergone a surgery at the age of 15. Henceforth I am not facing many problems. However I suffer from a severe body ache especially with a severe pain in both my legs which is due to the weakness of the legs and pain in both the eyes very often. I appear normal like any other person but the physical pain that I always suffer from cannot be described, but I am mentally strong and can tolerate that.
Comment from: Chris, 19-24 Male (Patient)Published: August 11
I am a 20-year-old lady who was diagnosed with Marfans syndrome at an early age. It was inherited from my mother who sadly passed away at 38 in 2002. Since then, I have undergone two aortic valve replacements. The first operation didn't go too well: Six months after the surgery I was rushed into the hospital and told my heart had dilated to 10 cm. But as long as I'm still ticking, I'm still happy.
Comment from: 45-54 Male (Caregiver)Published: May 11
My wonderful husband has Marfan syndrome. He has had several life threatening operations, and still lives his life to the fullest. He is a great hunter, and his father died when he was 6 of a aorta dissection. The doctor's just didn't know enough about Marfan's back in the 60's, and he died in the emergency room. My husband is 45 now, and has lived many years longer than his father, thanks to the great doctors. His last surgery was 10 hours. The heart valve they put in when he was 20 got infected when he was 35, and He had to receive human heart valve and aortic tissue, to save his life. That was many years ago. Since then, his aorta has dissected over a foot, and stopped at the kidney area. He has had many problems over the years with his condition, but he stays positive. His sister, bless her heart, died two years ago from the Marfan's syndrome. She had a rod put in her back for scoliosis. She lived her life as she wanted, with no doctors, or treatments. She was 45 when she died. Her aorta ruptured. Her two daughters have a form of the syndrome, and one of them, also has a rod in her back. The other has some of the symptoms of the Marfan's, but has been in good health with no surgery. My husband never had children because he didn't want to pass on the gene. He has lost most of his family to Marfan's syndrome, as all but one in his family on his fathers side had the disease. I just want to say that he is a strong man, who knows his limits, and takes care of himself. Except for dragging deer out of the woods that is. His last surgery was years ago, and he was told that the tissue would be good for at least 10 years. He is getting MRI's and check-up's because he says it is "up to me weather I live or die" He may have Marfan's, but he is getting old and loving it!!
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Since I was 12 years old, I found that I was always taller than my classmates. I had long legs and arms. I also had nearsightedness, but I studied well in class. After graduating from college, I had an ache in my left eye because of a dislocated lens. It was then that I found out that I had Marfan syndrome. Two years later, I continued to have eye problems with my right eye. Now, in my 40s, I still feel well, but my heart rate has slowed down to about 60 beats per minute.
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