I Knew Befor The Doctors Knew

Im 19 and was told I had marfans syndrome when I was young by my parents I wasn't officially diognosed till I was 13 .i remember when a nurse first asked if I had been diognsed by it when my parents told them I hadn't and the nurse getting mad that I hadn't. but they knew because my mother has it my grandfather and his mother to . When I was 13 me &my brother were both put in to foster care and later adopted by two different famlies but we live in the same neighborhood it wasn't till then I started seeing doctors regularly for the problems that started to crop up . I've had 2knee surgeries a lung collapse and multitude of tests within the last 5 -6years it's almost as if a year can't go by without something happening lts dishearting to think that this what I have to look forward to from now on . It also makes feel guilty for bring so much worry into Laura's life. ( my adoptive mother ) I mean she took me in And everscine that time she's had to worry and try to understand how this effects me .and worry about helping me adjest to the new family we made she was single had no kids and after I came she took in more girls my for. I feel that if I hadnt come to live with Laura I don't if would even be here.my parents wouldn't have gotten me the treatments I needed I don't know what kinda of person I would be if I had staid there . Is it messed up to not hated them for they did to me but for what my. Brother and niece went through?
At the moment I'm trying to find doctors that will take my insurence I was in the hospital when I turned 18 and suddenly all my doctors dropped me I'm still trying to find new doctors . It was hard i needed doctors so could find out what was happening to me . Im Still looking for a orthopedics doctor but mostly thats about all I need .
Minwell Minwell
18-21, F
1 Response Jul 19, 2012


I'm sorry for what you have had to go through. My daughter who is 17 was diagnosed at 7 with Marfans. Her lung has collapsed, been on a ventilator in ICU, stainless steel rods in her back, chest repair with a bar for her pectus escavatum and is on a bipap when she's not at school most of the time because of her decreased lung capacity. She has a mitral valve prolapse, too, so is on heart meds.

I will be praying for you. I hope things start looking up for you. Can you tell me if you experience tiredness a lot? My daughter always seems tired. It seems she never wants to get off her bipap. She doesn't want to be involved in groups because her voice is so quiet that a lot of people have a hard time hearing her.

I don't know if you'd want to contact her or if she even wants to talk about this, but I'm concerned that she seems to be very intraverted due to what she has been through. I am trying to be supportive. Do you have any help for me as a mom to a young, beautiful girl with this condition?