Adults with galactosemia

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Adults with galactosemia

Postby Sharon » Mon Sep 26, 2005 7:09 pm

I am 45 years old, and I have galactosemia. It seems as though my problems have increased as I have gotten older. Could it be that my mother took better care of me when I lived at home? Or is there something to this? I am having emotional problems. Any adults with galactosmia who might respond? I am concerned!!

Thanks for your input.
Sharon
 
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Location: USA

Postby kmalyn » Mon Sep 26, 2005 9:20 pm

I am 30 years old. I have not dealt with increasing problems myself but, I have heard of others that have. Maybe the problems don't increase until after age 30 and I will see more later.

Kimberley
kmalyn
 
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Postby Sharon » Tue Sep 27, 2005 10:45 am

I have done fairly well in life. I have a college degree; I am married; we own a home. On the downside, I must take some meds, and if I miss taking them, life is unbearable (for everyone!) I don't know if it is ME, or if it has anything to do with galactosemia, but I can sometimes feel extreme rage. I'm sure it's a hormone thing. What I don't understand is this: If I had premature ovarian failure as a young teen (or child), why am I going through menopause now??? Why must I have these hot flashes?? This past week was terrible!

I'm new at this site, so please forgive me. Do doctors check this site? Are there any doctors who treat adults with galactosemia? Are we on our own? As a child, my doctors were the best. But they treat children. They don't understand what I'm going through. I don't know if the problems have to do with galactosemia, or if it's ME. Understand?

Thanks.
Sharon
 
Posts: 137
Joined: Fri May 06, 2005 9:05 pm
Location: USA

Postby kmalyn » Tue Sep 27, 2005 4:16 pm

There will be a galactosemia conference from the Parents of Galactosemic Children next summer. Anyone can attend. I have tried to go the last two times because I did not hear about them before. Doctors go to these conferences and talk. They will answer questions. A couple of doctors are trying to do research to help us find out more. The conferences are usually about every two years. Go to www.galactosemia.org to find out more about the next conference.


Kimberley
kmalyn
 
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Postby kmalyn » Tue Sep 27, 2005 4:18 pm

I am married. We just got our first home about three years ago. We are trying to adopt but, it can take a very long time. We are in a foster/adopt program and we currently have foster children in our home. But, it does not mean the children will go up for adoption.


Kimberley
kmalyn
 
Posts: 238
Joined: Sat Aug 23, 2003 12:20 pm
Location: USA


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