Marfan Syndrome Forum

About Me

I am writing this website to share with the world the fact that I have Marfan Syndrome but it doesn't have me.

My History with Marfan Syndrome

I have had Strabismus-that is a lazy eye which is a weak muscle and I had to wear a patch over my left eye. Finally, I had to have eye surgery on my left eye to fix the problem.Then I had Bronchitis and later on, I had Pneumonia and Scoliosis at the same time. I had surgery for my Scoliosis when I was about 13 years old. That was when I was diagnosed with Mitral Valve Prolapse. As an adult I had Congestive Heart Failure, then surgery to correct my Mitral Valve Prolapse,which had deteriorated rapidly. After my surgery, the doctor had me on a Prescription nose spray for apparent allergies, which I am not using anymore. I have Obsessive-Compulsive behavior and Agoraphobia. I still get Panic Attacks. Earlier I was told by doctors that I had Asthma and was on various medications for it. Later on, when I got stronger after my Mechanical Valve Replacement surgery, I could breathe better and better every day, so I wonder if my Asthma went away as an adult or was it that I never had Asthma to begin with.
Among my many mishaps along the way, I also got stung by a Jellyfish, stepped in a pile of Fire ants, and got burned on my stomach. I wonder if this could have caused aditional nerve damage because I already had neurological problems and didn't walk until I was around three years of age.

My Hobbies and Interests

When I said"I have Marfan's but it doesn't have me" I mean the following. I bowl, I do crafts, and I do photography not to mention this project of building this website. My sister and I organized a Family Cookbook of which I am very proud. My Sophomore year in high school was a disaster and I had to drop out because I was so frustrated I couldn't keep up the normal schedule.
But eventually I completed my high school requirements by a Home Schooling correspondence course with my Mother's help. I did very well and later on went on to complete a Bookeeping and Accounting Computer course( again by correspondence)
I would like to hear from any of you that have Marfan Syndrome and learn how you live with it-your hobbies, interests, and accomplishments.
If you have Marfan Syndrome and might have had some minor or unusual medical condition that is apparently not related to Marfan Syndrome, let me know the specific area you would like me to research for you by sending me an E-mail. Just click the E-mail button at the bottom of this web page.

Marfan Syndrome Forum Links

Healthlink,USA
Mitral Valve Prolapse
Attacking Anxiety

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