I Will Be the Last.

No more.I have a chance to say that now.My mom and grandmother didn't.My grandmother lived in an age where they dind't knew what marfan was.She had children so they could take care of her and because it was expected from them then.My mom had to work at home since she was little.Her brothers abd sisters could go to school.(two brothers had marfan,a sister and two other brothers didn't)She never had an education but only a bitter mother who hated everyone and everything because of the pain she felt the last 30 years of her life.She was jalous,so very angry.So my mom escaped by marrying my dad.She got 3 children from him and left(another story)My brother,(diagnosed with marfan)stayed with my father and my sister and i went to live wit my mom.My sister,healty,has a little bit trouble with understanding,she's not retarted but she's a little slow.She gets very upset when she tries and tries but still doesn't get it.So i was the one that kept things going.I went to the market every day after school.You couldn't trust my sister then,she would always come home with the wrong things.And i made dinner and took care of my mom.Mostly i stayed home from school because she needed me.So i didn't have much education too.Finished as soon i got 18 so i could work.I only had three years to go but i knew mom needed the money.Two yers later i moved across the street.So i was closeby but still had some privacy.Now the clue of my story is that i don't want my children to go trough what i or my mom went trough so i'm not having any.I will be the last one.Anyway there aren't many men who would be able to live with someone who has what i have.They just aren't that strong.Not for a long time anyway.

illiona illiona
26-30, F
5 Responses Feb 17, 2008

I feel sorry for you. You are the only one that can change that way of living. I know I used to think that a guy would never want to be with me. But that has changed for me. I want to have kids someday. With the new research that is out there. You can live a long life. So quit thinking this way. Enjoy every single day. You have siblings that can take care of your mom. Get your own life.

My Son has Marfans and it came out of no where there is no family histry at all but i understand what your saying he is only eleven but i now look at him and wonder whether he should ever have children.Who would want to take a chance and see another chid suffer like you guys do. Well done for taking the mature approach my heart goes out to you and your family

Are you involved in support groups at all? There are many around and being in a group or involved even online with people who are going through the same situation can be SO healing.. Here is a couple links if you are not involved already..<br />
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National Marfan Foundation:<br />
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http://www.marfan.org/nmf/index.jsp<br />
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Marfan Syndrome Support Group:<br />
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http://www.peacehealth.org/kbase/shc/shc29mar.htm<br />
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Marfan Syndrome Link Library:<br />
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http://www.kumc.edu/gec/support/marfan.html<br />
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And also those who are reading can go to the links to learn more if they may be affected by this disibility or know someone who is...<br />
I hope this helps and I again Thank You for sharing your story!! Love And Light CindySue

sure,marfan comes in a number of ways.very simplefied;people with marfan miss a gen.That's how they explained it to me.that gen takes care of our glue.(told you simplefied)every bone in your body needs it to stick together.You have a lot of different problem areas like your back,eyes,artroses and on...when you're in your 30 your body becomes more fragile. for instance If i hit my toe there's a good chance it's broken.What i have is too flexible hips,a too small spine in my back and artroses everywhere.People with this condition also don't really get older than 60,your body is too broken by that time.It's incurable also.All i can too is fight the pain.And treat the symptons.Was that enough info or do you need more?

Could you explain more about the disability?? It may help many to understand it and see it then from another point of view? Thank You so much for sharing, I am very happy to meet you and if ya need a shoulder just come on by message me and plop yer head on mine!! lol