I just got back from the hospitle that I spent six hours in. Its officeial. My sister has Marphan.
For those of you who does not know what Marphan is, it is a carrdiacted or resporatory disease that the genes inheirate. I don’t know how to explain it but thats all I know about it. It causes hard breathing, chest pains, dizzyness, and other sickling illnesses.
This is the last complaint or whatever kind of thread you’d call it that I will make. Because of the state my little sister is in, I won’t be around as much as I would want.
I just thought for those who cared would like to know how things are going.
Actually, it’s a malformation of the conjunctive tissues, with those symptoms you said being the consequences of it.
Chris, she can live a regular life as long as she takes care of her heart. Don’t be sad or anything. You and her have led a normal life up to now, and normal it will keep being.
I know she can live a normal live but… to see her in pain even when she sleeps? She complains about her chest hurting even when she lays down. I’m afiard…
A person with Marfan is like a turtle without a shell. The body has little protection from mechanical contacts and friction. Hence the problems. Life quality may always be improved if a few little things are done, but only a doctor may tell you what to do. Even so, I believe she’ll be OK after a few recovery days at home.
Don’t lose hope, and think of supporting your sister as a chance to stay closer her, not as somehting sad. I know people who have relatives carrying worse diseases and they found a way to be happy. You can too.
My brother comes home and finds out that she’s going to the doctor… he ask if we’re still going SHOPPING. My mom doesn’t answer and as we’re on our way home he asked, ‘Can you take Chris?’ What a jerk. All he wanted was the damn computer and he didn’t give a shit about Vickie. I’m pissed off at him. When I came home, he didn’t even bother to ask how she was doing…
Well, I suppose getting mad at him will just make things worse. Forget what he’s done for a while and focus on your sister. Keep us informed on how she’s going, ok? We wanna hear that after all she went out of the hospital all OK.
I feel really bad for you Chris…of course sympathy can’t help from me…I’ve never even heard of the disease and it seems awful.You seem to be going through your share of pain these days.Nothing I can say can make it better (Ren said it much better than me) so keep posting, so we can hear how you’re doing…I’m really sorry…be strong girl.
i’ve also never heard of marfan, but it sounds like something no one should be stricken with. i truly wish your sister the best and hope that things get better soon…
(imo, your brother sounds like he should be beaten…but try to ignore him and focus on your sister’s condition…)
Um… I have somethin wrong with my respiratory system too. I forget what it is, but it involves chronic bronchial spasms and asthma combined with weak lungs. I go to the hospital for it every year. This year it was 13 hours, last year it was only 3… wonder how much it will be next year.
Thankfully, I don’t have respiratory problems…but I have body spams, a slight case of insomnia, small case multiple personality syndrome, & I"m prone to head injuries because of ADD & a short attention span.
I also share my empathy with you, Chris. But if it’s gentic, shouldn’t it be happening to you soon?
damn…that really sucks…