My daughter was diagnosed about 10 yrs ago with Gittlemans , to which we never heard of, no she is pregnant with her 2nd child (17 WEEKS) and they had to put a picc line in her todaymy questions is this should we seek out a high risk OB Dr?

I am no genetics expert, but in reading your post a few things jumped out at me that I remembered seeing in searching for my son's genetic problem. Have you looked into Marfan Syndrome?

The things that reminded me of it is the long, narrow face, bird like features, stretch marks on skin.

You can read more here: http://www.marfan.org/nmf/GetContentReques tHandler.do?menu_item_id=4

I know how difficult it can be to find information on an unknown genetic condition. We see a genetecist and even with her help, we still don't know exactly what is going on. I just try to put all the puzzle pieces together. A helpful site is OMIM. Our geneticist uses this as well. You can enter your features and see if anything comes up. Check it out at http://www.ncbi.nlm.nih.gov/omim/

Good luck!

I also know how difficult it can be to find information on a genetic condition. I dealt with this when my wife and i were pregnant and we had prenatal testing. This actually led me and my genetic counselor to create a website that was written for people, not professionals. It is called AccessDNA and we have information pages on many of the conditions described above.

I also have many genetic defects and look awful. Last year I attempted suicide twice because of it. I suffer from extreme asymmetry, abdominal trouble as you have mentioned, facial, neurological, endocrinological, and gastrointestinal as well as the immunity problems and a strange phenomenon called deja vous. My entire family has turned on me, everyone I know has turned on me and I have tried everything I can to survive. I am currently being treated for anxiety and depression, but when the "money well" runs dry (and it is quickly) I fear the worst for me.


As a younger person I was skinny and not so attractive and didn't have any friends to speak of. Several times in my life I looked halfway decent but because of the extreme stress I have been in this year my condition gets steadily worse. My own mother told me she didn't care about me and if I wanted to know what was wrong I should "Go look in the mirror." I have one family member left who is presumably "trying" to help me but I don't see how I will make it. The brain damage from the suicide attempts. The fact that I can't find a job because I am (for lack of a better word) ugly. Everyone I have turned to in my life since my condition has worsened, points to one thing I have done wrong and tries to make me look like an evil monster. I have had times when my life was presumably "normal" in the not too distant past but that is over. I fear what will happen to me because I have no insurance. My life has been ruined from my suicide attempts. My credit has been destroyed and my life is destroyed. I hate going out in public because of my appearance and the fact that one of my legs is probably two inches shorter than the other making me stumble and seem to "block" people who walk by me so I hide from the world. It would be nice to see someone smile at me again genuinely. May god bless you and I hope he can help you, as I hope he can help me before I am painted into a corner and end up in an institution or I end up dead. Does anybody out there have any answers? And by the way it is very good to see that there are parents on here trying to take care of their children, unlike my parents who simply ignored the issues and labeled me as trouble.

I have just returned from another state to try to find help from my family. My sister laughed at me, my brother put his fist in my face and my brother in-law pushed me up against a wall and pointed his finger in my face and told me to grow up. Is there some sort of social security benefit for being a genetic defect and surviving suicide? If so I really need to know. I am running out of options and running out of resources fast. I would love to talk to someone who has had a similar issue. I have spent a year doing research and have learned that it IS true that the world doesn't give a rats behind about you if your not healthy and attractive and if you're not healthy or attractive you better have a lot of money, or be highly intelligent. Some such article with facts can be found here from a yahoo answers post which points out two very relevant documented articles:
http://answers.yahoo.com/question/index?qi d=20081212004826AAOFigJ