Story about Marfan Syndrome , Multiple Sclerosis.

Nu life with Marfan Syndrome

Jul 4, 2018

By: Miranda

Year Condition Began: 1993


One day , back in 1993 my youngest sister felt bad. She was in a lot of pain. I took her to the doctor and he send her to the hospital. There they thought she had nerv pain...and while the doctors were talking about a treatment my sister fell of the hospitalbed on the floor...I totally panicked and yelled for a doctor, nurse or anybody for help. But they couldn't help my li'l sis anymore...her aorta rupted.
So after an obduction on her body they came to the conclusion that my sister died because of Marfan. She was 21 years young.
A few weeks later my dad asks us to see a genetic doctor and the conclusion was that my mother, my other younger sister and me had Marfan Syndrome.
It totaly changed our lives. I already had a son of 2 years and the doctors advised me not to have any more children. My son also has Marfan. And my sister has 3 children ( 2 girls and 1 boy) and her daughters have also Marfan.
My sister had open heartchurgery in 2006..thank God she is doing good now...My mom died in 2015 because of Marfan..and I...I have troubles with enkles, knies, elbow, etc, etc. But I live my live and enjoying the good things...and trie to forget the bad things.
(Sorry btw for my English)
Greets from Holland..

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