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graves disease
- By lisajo · New reply yesterday at 10:35 pm
- Journal · 19 replies
- I go to the endocrenologist in october they couldnt get me in any sooner .I have a bulging eyeball and my thyroid is underactive and not responding to the thyrixozine(synthroid) and I am in so much pain ...
Disability
- By gigglebox · New reply November 20, 2009
- Journal · 17 replies
- I am so so excited!!! After a year of waiting i got approved. I didn't even get the ususl first denial. I needed the insurance so bad. Now maby i can get to a doc that can be more help. Or will it be ...
I have hydrocephalus
- By jennifer131 · New reply November 15, 2009
- Discussion in Living with a genetic or birth defect · 20 replies
- My name is Jennifer. I am 25. I have hydrocephalus. I have had it since birth. I would like to talk to others that have it. Feel free to message me ...
hydrocephalus
- By pepsiman4756 · New reply November 14, 2009
- Journal · 4 replies
- I developed hydrocephalus as an infant. With a mircle the swelling stopped at age 2 and the major resdidual damage from this was my optic nerve and coordination. ISince it had stopped I did not require ...
A.J.
- By lisajo · New reply November 11, 2009
- Journal · 39 replies
- A.J. is my 8 year ol grandson who was recently diagnosed with leukodystrophy ,possibly methocromatic and we are lost and confused and in so much pain right now and we are looking for answers ...
Neurofibromatosis and Working
- By Tank · New reply November 9, 2009
- Discussion in Living with a genetic or birth defect · 3 replies
- I had went in earlier this year to apply for a job with Subway in Plainwell Michigan, only to be told by the manager he could hire me but I would have to work in back he had to be considerate of his customers ...
Hope
- By TaniaJ · New reply October 28, 2009
- Journal · 7 replies
- My 17 year old daughter Aimee was denied entry to the Navy recently on medical terms because of her NF, though we do have the right to appeal. She had an Opthamologists appointment last week and everything ...
Blah
- By Tank · New reply October 23, 2009
- Journal · 7 replies
- I really wish there was a NF doctor closer then Ann Arbor, Its a ways for us to travel. Our Income is 269.00 a month, 130.00 for rent, 80 for car insurance. My husband has applied for jobs from South ...
NF and relationships
- By Plushie · New reply October 22, 2009
- Journal · 3 replies
- I was wondering how I can explain NF to my bf, he knows a little about it from me, research and a mutual friend but i dont think he fully understands it ...
Info on MCAD Deficiency
- By dwcasey · New reply October 18, 2009
- Journal · 3 replies
- I am trying to find a group and more information on this genetic disorder. My grandson was diagnosed with it when he was four days old. Right now we have him on a two to three hour feeding schedule usually ...
MCAD
- By dallasmama · New reply October 18, 2009
- Discussion in Genetic conditions · 5 replies
- I am looking for anyone who has a child with MCAD. Our daughter was diagnosed as being a carrier, but the test results unfortunately did not show enough info to determine if she actually has the disorder ...
Hyperinsulinism
- By Hyperinsulinism · Posted October 7, 2009
- Journal · 0 replies
- What is Congenital HI? Congenital hyperinsulinism (HI) is a disorder in which the insulin cells of the pancreas (beta cells) secrete too much insulin and at the wrong time. Excess insulin causes low blood ...
Alicia Journey with Congenital Hyperinsulinism
- By Hyperinsulinism · New reply October 6, 2009
- Journal · 2 replies
- Congenital hyperinsulinism (excessive insulin production) is the most common cause of persistent or recurring hypoglycemia (low blood sugar) in infancy. Many infants and children affected with any of ...
It's so difficult
- By Speakingwings · Posted October 6, 2009
- Journal · 0 replies
- I have schizencephaly and a cyst that covers the whole right side of the brain.It looks like I've had a stroke.Some days it doesn't bother me when others stare at me and then there are days I just can't ...
Its so hard!
- By lucaboy10 · New reply September 23, 2009
- Discussion in Birth defects · 1 reply
- Its really hard to have Hydrocephalus because I get worried like all the time and I cant be normal and I got hit by a car not long ago so that made it A LOT worse ...
hydrocephalus group
- By DRIVER · New reply September 20, 2009
- Discussion in Living with a genetic or birth defect · 13 replies
- Many people who have heard my story are amazed, but I have lived it and it seems normal to me. I was born with hydrocephalus and porencephaly. I was very sick for a long time with seizures and being in ...
Heart problems
- By stephsarge85 · New reply September 17, 2009
- Discussion in Learning your child has a genetic condition or birth defect · 2 replies
- hi my name is stephanie and my son has herterotaxy and he is dextrocardia. there are alot of severe problems with his heart. Its amazing that he is even alive and now he has had surgery for the second ...
Ava's brain surgery, and other stuff
- By Valarie · Posted September 15, 2009
- Journal · 0 replies
- Well the doctors office has scheduled Ava's brain surgery for her Cranio, it is going to be December 9th. We will be in Boise Idaho for a week. Well when I say we, I mean Ava and I, the rest of the family ...
Neonatal Graves...what we have learned
- By Valarie · New reply September 12, 2009
- Journal · 1 reply
- Well since the twins were born I have learned alot more about this disease. I thought I knew alot when our 3 year old had it, but I was wrong. Ava has Craniosynostosis, and hydrocephalus, which is actually ...
Amazing Experience
- By StephLynStill · New reply September 6, 2009
- Journal · 5 replies
- I have been living in the "LysoWorld" now for about six years. I started very pinpointed with one particular disorder (there are over 60 - most w/ ridiculously hard names to pronounce). It took a long ...
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