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Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Journals
Disability
- By gigglebox · Posted November 7, 2009
- 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 ...
Hope
- By TaniaJ · Posted October 21, 2009
- 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 · Posted October 21, 2009
- 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 ...
Hyperinsulinism
- By Hyperinsulinism · Posted October 7, 2009
- 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 ...
It's so difficult
- By Speakingwings · Posted October 6, 2009
- 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 ...
hydrocephalus
- By pepsiman4756 · Posted October 4, 2009
- 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 ...
NF and relationships
- By Plushie · Posted September 24, 2009
- 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 ...
Ava's brain surgery, and other stuff
- By Valarie · Posted September 15, 2009
- 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 · Posted September 12, 2009
- 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 ...
Alicia Journey with Congenital Hyperinsulinism
- By Hyperinsulinism · Posted September 10, 2009
- 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 ...
Ava
- By Valarie · Posted August 28, 2009
- 0 replies
- Ava had physical therapy yesterday, and right before the PT appointment stood for about 15seconds for the first time. I was so happy, but then the PT lady was here and she stood for alot longer. It's ...
Ava and Ella and doctors
- By Valarie · Posted August 26, 2009
- 0 replies
- Well our daughter (faternal twins)were born 17 months ago, they were born with a really rare disease called Neonatal Graves disease. This disease had done alot to one of the twins, her name is Ava. She ...
graves disease
- By lisajo · Posted August 25, 2009
- 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 ...
5 minutes on the lysosome. Because it's time we know.
- By StephLynStill · Posted August 13, 2009
- 0 replies
- So did you ever wonder what happens to the tadpole's tail? Does it just fall off? No actually. Lysosomes eat it. (autophagy: the cell's ability to eat itself...) And the webbing in our fingers and toes ...
Scheduled maintenance this evening
- By TeamInspire · Posted August 10, 2009
- 13 replies
- All, Inspire will be performing database updates this evening starting at 8:00 Eastern. We expect the updates to take no more than 2 hours and the site will be unavailable at this time. We thank you for ...
Lysosomal Disease and Alzheimer's
- By StephLynStill · Posted July 27, 2009
- 0 replies
- Hi, Here is another little boy affected with Lysosomal Disease, Dillon. The correlations between Lysosomal Disease and much more well-known issues like Alzheimer's are being uncovered every day. With ...
A.J.
- By lisajo · Posted July 17, 2009
- 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 ...
Forteo
- By glittergurl8619 · Posted July 11, 2009
- 2 replies
- Hi Everyone, I belong to other groups on here but I am new to this group. I have had osteoporosis and osteogenesis imperfecta for a while now, but I finally just got Forteo, however it was shipped to ...
Again its' been a while since I last posted
- By CanadaNuse · Posted July 4, 2009
- 0 replies
- A lot has happened since we last posted. Current Up date from NIH isn't going to be clear cut and to the point. All it say's that my daughter Ashley case is more complex then they thought! Yesterday July ...
too sick to undergo general anesthesia?
- By glittergurl8619 · Posted June 23, 2009
- 0 replies
- Hi everyone, I need as many opinions as I can get from all of you! I have a big dilemma. Well first of all to give a quick synopsis- I am 23 with osteogenesis imperfecta and still can't get treatment ...
