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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
Symptomatic ALD
- By NikkiFoster · Posted October 14, 2009
- 4 replies
- My 7 year old son was diagnosed a month ago with childhood cerebral adrenoleukodystrophy. In the past 2 months his hearing and vision have deteriorated rapidly. He is becoming very hyperactive and uncontrollable ...
ALD
- By marinemomkerry · Posted October 11, 2009
- 1 reply
- my 9 year old son had a bone marrow transplant almost a year ago. while i hope for more the reality is in front of me, he has lost pretty much everything but he does laugh and smile and is easily pleased ...
vanderknaap disease
- By MBHC · Posted September 21, 2009
- 1 reply
- My 16 months baby got effected from MLC. I want another baby. we went for MLC 1 gene sequencing. But we can't find any mutuations from that test. what will be the chance of healthy baby next time. Any ...
finally things are moving along......
- By zoe4manaia-rain · Posted September 10, 2009
- 1 reply
- after 6 long weeks of NOTHING, yesterday we finally got confirmation that manaia-rains mri pictures and clinical notes are being sent to dr van der knaap in holland for a 2nd opinion. our daughter is ...
graves disease
- By lisajo · Posted August 25, 2009
- 18 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 ...
Our Journey
- By Halls · Posted August 4, 2009
- 3 replies
- We discovered my daughter's lack of myelin at 6 months of age. Most of her problems seems to have started around 4 months though. She had severe reflux from about 1 month of age followed by sleep apnea ...
frustrating time
- By zoe4manaia-rain · Posted August 4, 2009
- 4 replies
- hi there, my nearly 2 year old daughter has been diagnosed with leuko, but, the doctors are yet to confirm which type, the only type that has been eliminated is MLD, and we've been told there are approx ...
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 little about my husband...
- By babygirl2369 · Posted July 21, 2009
- 7 replies
- Here are some updates that I had done on Facebook March 25, 09: we went back to have the neuropsychological testing re-done on brad yesterday at the center for developmental learning at UNC chapel hill ...
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 ...
hitendra
- By hitendra · Posted July 15, 2009
- 0 replies
- i m an indian citizen and my 10 year old son r suffring from ALD now he is total blind dumb and badriten any give me better advise ......or call me 09669929000 ...
Water Electrolyte Balance/Hyponatremia
- By mandyblue · Posted July 8, 2009
- 1 reply
- Please check out the site listed below for information concerning water electrolyte balance. There is a video that I was not able to post in this journal. I am hoping that this site will be helpful to ...
chenodeoxycholic acid vs ursodeoxycholic acid in the treatment of CTX
- By Avril · Posted June 18, 2009
- 12 replies
- the doctors know nothing in the uk and treat my mum as an unknown and my auntie was a guinee pig who died needlessly because of their lack of knowledge im sure i can help things be better for my Mum i ...
Share your story via video!
- By TeamInspire · Posted June 15, 2009
- 28 replies
- Sometimes the most powerful message each of us can share is our personal story -- our own experience. With upcoming healthcare legislation pending, one way we can be advocates is to share these stories ...
Follow Inspire on Twitter and Facebook!
- By TeamInspire · Posted June 10, 2009
- 32 replies
- We're happy to announce that you can now stay in touch with what's happening at Inspire by following us on both Twitter and Facebook. While Inspire communities are still the best places to connect with ...
Update on Tyler
- By snugglebearsmom · Posted June 10, 2009
- 4 replies
- After Tyler's little brother, Jack was born on 10/28 and I had recovered, I went to see Tyler for a quick visit. It was so painful to see my baby the way he was. He had chemo so his hair was gone and ...
Fortunate
- By Quiller · Posted June 7, 2009
- 2 replies
- Some days I start to feel sorry for myself -when I fall and fall and then I remember how fortunate I am that my son is 18 years post transplant. I can't do what I used to but my son is alive ...
Electrolyte Abnormalities
- By mandyblue · Posted June 7, 2009
- 2 replies
- This information is being posted in "My Journal" for anyone who wishes to use it as reference material to help understand their electrolytes, and metabolic disorders. I have previously promised my friends ...
