Already a member? Sign in
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!
Active journals
graves disease
- By lisajo · New reply 10:35 pm
- 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 ...
15 month daughter undiagnosed
- By cjackson · New reply November 13, 2009
- 22 replies
- Hello everyone, I was just wondering if any one can relate!! I have a 15 month old daughter who is my specail fighter! She has had feeding issues since day one. She has a unknown leukodystrophy, and infantile ...
Leukoencephalopathy
- By AND · New reply November 12, 2009
- 11 replies
- Hello! Friends! My name is Andrey. In the summer of 2008 to my son Victor, have diagnosed: Leukoencephalopathy with brain stem and spinal cord involvement and elevated lactate on МР spectroscopy. Spastic ...
A.J.
- By lisajo · New reply November 11, 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 ...
"HYPOKALEMIA OR LOW POTASSIUM"
- By mandyblue · New reply November 8, 2009
- 32 replies
- I want to share this research information in "My Journal". This is a very long collection of articles, that explains in great detail, about Hypokalemia or Low Potassium. It is for anyone who needs help ...
LBSL кто нам поможет?
- By AND · New reply November 6, 2009
- 20 replies
- Здравствуйте! Друзья! Меня зовут Андрей. Летом 2008 ...
Alexander disease
- By bkabo · New reply November 2, 2009
- 78 replies
- Could anyone give information on Alexander disease? If you know anybody with this disease or know someone who suffered from this disease I would like to get in contact. I have a 17 yaer old son suffering ...
finally things are moving along......
- By zoe4manaia-rain · New reply October 28, 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 ...
A little about my husband...
- By babygirl2369 · New reply October 26, 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 ...
vanderknaap disease
- By MBHC · New reply October 23, 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 ...
Symptomatic ALD
- By NikkiFoster · New reply October 16, 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 · New reply 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 ...
Electrolyte Abnormalities
- By mandyblue · New reply October 11, 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 ...
Water Electrolyte Balance/Hyponatremia
- By mandyblue · New reply October 11, 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 ...
my baby has effected wiyh VANDER KNAAP DISEASE
- By mbh · New reply September 29, 2009
- 19 replies
- Hi, I got to know that my 8 months old baby has effected with lukodystrophy- vander knaap disease through MRI, MRS reports. Can any one tell me the impact of this disease? i dont know much about this ...
today, July 25, 2008 ALD son
- By BMA · New reply September 17, 2009
- 11 replies
- I am almost 50 (this year) and have a son, 26 years old. He was diagnosed with ALD at age 22 during his 4th year of college. He had a a bone marrow transplant October of 2004 at the University of Minn ...
Our Journey
- By Halls · New reply September 15, 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 ...
chenodeoxycholic acid vs ursodeoxycholic acid in the treatment of CTX
- By Avril · New reply August 27, 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 ...
Guestbooks are now live!
- By TeamInspire · New reply August 15, 2009
- 6 replies
- Hello everyone, Last week we mentioned that we'd be adding guestbooks to Inspire in the near future, and they are now live! We're very excited about this feature and hope you enjoy it. To check out your ...
Van Der Knaap Syndrome
- By anniechang · New reply August 14, 2009
- 2 replies
- I am interested in connecting with other families that have a member with this form of Luekodystrophy ...
