LND Net

Lesch-Nyhan Disease support group

The network for people living with the Lesch-Nyhan Disease, their parents, teachers and anyone interested in learning more about LND.

Latest Activity

Lise Walton is now a member of LND Net
Feb 3
Becky is now friends with Nicholas and Tammy
Jan 25
Nicholas is now a member of LND Net
Jan 25
marian is now a member of LND Net
Jan 14
Rasheedah A. Mahali replied to Dan Cederborg's discussion Treatment, and possible cures. Also some things I thought of that might help.
"This idea is not as far-fetched as it sounds. I was reading, recently, about how dogs can smell sickness in a person way before they even know they will be getting sick. I have also never heard of the drug you mentioned above but I will go to that…"
Dec 10, 2014
Rasheedah A. Mahali left a comment for Gold
"Hi - I am Rasheedah's Mom. I will be checking her page for anyone wanting to leave a comment for her or myself. She and her companion have communicated with a few of her new friends on this site and her companion no longer works with her. He…"
Dec 10, 2014
Michelle Lucas and Amy Laws are now friends
Nov 30, 2014
Michelle Lucas replied to Annalie Rodriguez's discussion Help me understand
"Anna you can call me at anytime my number is 319.961.0398.   Michelle "
Nov 30, 2014
Ruch replied to Claire Colmer's discussion Kidney transplant
"Yes Paola is a member of this group but I do not know how active she is. You can do a member search and then try to send her a message. There is a LNS group on facebook and the members are a lot more active there.  Our daughter is 14 years old.…"
Oct 28, 2014
Claire Colmer replied to Claire Colmer's discussion Kidney transplant
"Thanks for replying. We knew it was rare but not that rare. Is Paola a member of this support group? How old is your daughter? "
Oct 27, 2014
ebru90 left a comment for BURAK ERGUN
"merhaba , sizinle tanisip iletisime cok gecmek isterim geri yazarsaniz cok sevinirim benim oglumdada bu sendrom var... daha kücük bir bucuk yasinda oglum.. cevabinizi sabirsizlikla bekliyorum kendinize iyi bakin alllaha emanet"
Oct 26, 2014
Ruch replied to Claire Colmer's discussion Kidney transplant
"Our Daughter is one of the few girls with LNS and also suffers from very advanced renal failure. About a year ago we were told she would need to go on dialysis in  the not too far future. Luckily she has been stable for the past year and it has…"
Oct 26, 2014
ebru90 shared a profile on Facebook
Oct 23, 2014
ebru90 and Aliyah Sacranie are now friends
Oct 23, 2014
Claire Colmer posted a discussion

Kidney transplant

Hi I am currently working with a 12 year old young man who is due to have a kidney transplant. I just wondered whether anyone has had or knows someone who has LND and has had a kidney transplant .See More
Oct 21, 2014
Claire Colmer is now a member of LND Net
Oct 21, 2014
 

Welcome to LND Net!

LND Net member Anne Powell has written a memoir of her experiences growing up with her brother, Bob who had Lesch-Nyhan. It is available at Amazon.com. Dr. William Nyhan wrote the Forward and portions of the book were published in the December 2013 Journal of Genetic Counseling.

Forum

Treatment, and possible cures. Also some things I thought of that might help. 8 Replies

 I've been doing alot of research, since viewing Tristan's story about 2 months ago on Mystery diagnoses. I came across it while watching some other episodes on youtube and such, but This case "The…Continue

Tags: Stimulation, Brain, Deep, Treatment

Started by Dan Cederborg in Suggestions. Last reply by Rasheedah A. Mahali Dec 10, 2014.

Help me understand 1 Reply

Hey guys! My name is Anna and I'm a 17 year old high school senior. For graduation, I have to do a community service/volunteer work based project. For the last 2 years I have been working with a 5th…Continue

Started by Annalie Rodriguez in Announcements. Last reply by Michelle Lucas Nov 30, 2014.

Kidney transplant 3 Replies

Hi I am currently working with a 12 year old young man who is due to have a kidney transplant. I just wondered whether anyone has had or knows someone who has LND and has had a kidney transplant .Continue

Started by Claire Colmer in Announcements. Last reply by Ruch Oct 28, 2014.

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