Inspire connects patients, families, friends and caregivers for support and inspiration... More about this group
All new and active discussions & journals
SO excited to share what I have found!
- By pwrsrg77 · New reply yesterday at 2:02 pm
- Journal · 47 replies
- I have received TONS of wonderful support from this amazing community of people just like myself. All that struggle with debilitating symptoms, wrong diagnosis, less than quality doctors etc... I wish ...
My granddaughter is dying from a rare Metabolic disorder
- By nanainpain · New reply November 18, 2009
- Journal · 3 replies
- Hi, I am at lost for words and feel extremely hopeless. My 1 yr old granddaughter was diagnosed with Molybdenum Cofactor deficiency with 2nd option of Sulfite Doxadise definiency. This being 50 known ...
Somebody PLEASE HELP!!! ={
- By pwrsrg77 · New reply November 13, 2009
- Journal · 83 replies
- Well, I'm now 2 years into a disease that is sucking the life out of me. If I had a nickel for every time I've balled my eyes out & said my famous quote "I can't take this anymore" I'd be a very rich ...
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 ...
no place like home
- By Jesana · New reply August 16, 2009
- Journal · 5 replies
- so I went on Monday and had the baclofen pump replaced. they had a difficult time placeing the iv at least they put numbing medicine . finally the surgeon came he was able to put one in my foot. I liked ...
Guestbooks are now live!
- By TeamInspire · New reply August 15, 2009
- Journal · 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 ...
5 minutes on the lysosome. Because it's time we know.
- By StephLynStill · Posted August 13, 2009
- Journal · 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 · New reply August 12, 2009
- Journal · 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
- Journal · 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 ...
Share your story via video!
- By TeamInspire · New reply June 23, 2009
- Journal · 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 · New reply June 12, 2009
- Journal · 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 ...
Guestbooks - An exciting addition to Inspire
- By TeamInspire · New reply June 9, 2009
- Journal · 35 replies
- Hello everyone, We're writing to let you know about a great new feature we'll be adding to Inspire in the very near future: guestbooks. This is a feature that many of you have requested, and we're very ...
Help with Methylmalonic Acidemia and Homocystinuria
- By keerasmom · New reply June 8, 2009
- Journal · 2 replies
- My daughter was born on 07-11-08, and became very ill with pneamonia in Nov. she was taken to Kootenai Medical Center here in Idaho, where they couldn't stabalize her and her temp dropped several times ...
Dogs & Disorders
- By StephLynStill · New reply May 30, 2009
- Journal · 2 replies
- I had the opportunity to meet about 5 dogs with Lysosomal Disease (mps, I think), about a year ago. It was really an eye-opening and amazing experience. Now, I keep finding more and more articles about ...
This Hannah...
- By StephLynStill · Posted May 14, 2009
- Journal · 0 replies
- This what infantile Lysosomal Disease does ...
Trying not to give up
- By alearydee · New reply May 14, 2009
- Journal · 9 replies
- I have been exercising at least 4 days a week and sometime twice a day. My problem is I have not changed the way I eat. I still try to eat stuff that I know I should not have.......But, I dont know how ...
Moms, you rock!
- By TeamInspire · Posted May 1, 2009
- Journal · 0 replies
- Looking for a unique and extraordinary way to say "thank you" to your mom? In honor of Mother's Day, good friend of Inspire Dr. Gwenn (of http://www.PediatricsNow.com and http://www.DrGwennIsIn.com) will ...
Daughter with SCAD Deficiency
- By anewkindofperfect · New reply April 27, 2009
- Discussion in Living with a metabolic disorder · 1 reply
- Hi, this is my first post here. I have a daughter with a diagnosed SCAD Deficiency. She has one full mutation and one polymorphism. The metabolicist insists that this does not account for all of her symptoms ...
infintile gm1
- By malta · New reply April 21, 2009
- Discussion in Family and friends · 2 replies
- my 8 mth old grand daughter was just diagnosed with infintile gm1. can any one share expiriance ...
Lyso-What?
- By StephLynStill · New reply April 9, 2009
- Journal · 4 replies
- Just in case you haven't seen it. ;) xoxo s **ps - that's my kiddo ...
- More »
- New
- Active
- Discussions
- Journals
Sign in to see more
Inspire others
Group leaders
Discussion topics
You
About this group
Inspire connects patients, families, friends and caregivers for support and inspiration. Read more about our work.