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

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
2 hours ago
Claire Colmer is now a member of LND Net
2 hours ago
Andrea T. and ebru90 are now friends
Sunday
ebru90 posted photos
Sunday
ebru90 left a comment for Carlos
"hallo, ich möchte gerne mit ihnen kontakt aufbauen. Mein sohn hat auch lns, er ist 15 monate alt ich freue mich sehr auf einen antwort Liebe Grüße Ebru"
Sunday
ebru90 updated their profile
Sunday
ebru90 is now a member of LND Net
Saturday
Lisa Dennesen is now a member of LND Net
Oct 6
Lowell T. Anderson left a comment for Dawn Ng
"Be sure to read LND basics at the top of the banner.  Look for "behaviors" .  Much of it is written for teachers."
Sep 30
Dawn Ng is now a member of LND Net
Sep 30
Annalie Rodriguez posted a discussion

Help me understand

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 grader who has LNS and he has absolutely changed my life. Anyway, my project is focused around education and making sure he gets the education he deserves and spreading awareness. I would really love to talk to anybody who may have any information to help me! This little boy has changed my life and…See More
Sep 27
Annalie Rodriguez posted a status
"I'm a 17 year old high school senior. My senior project is on Lesch-Nyhan and i would love to contact anybody who has any useful info for me"
Sep 26
Annalie Rodriguez is now a member of LND Net
Sep 26
Caroline and Tammy are now friends
Sep 16
Lorna replied to Tara Renee Finn's discussion Anyone with an LNS son over 18.
"Hi I was very interested to hear that Rasheedah can not read. My son, Callum, also has quite severe reading difficulties. He learned to read normally when he was young but as he has grown up, and his behaviours increased, his reading ability has not…"
Sep 16
Lowell T. Anderson replied to Rasheedah A. Mahali's discussion DBS surgery outcome
"Rasheedah, There is a search tool on this site.  Look for the blank rectangle with a magnifying glass icon.  Type in DBH and you will find extensive discussion on this topic with several parents reporting results."
Sep 16
 

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

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 .Continue

Started by Claire Colmer in Announcements 2 hours ago.

Help me understand

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 Sep 27.

Anyone with an LNS son over 18. 6 Replies

Hi , my name is Tara , my son Riley is 17 . We saw a new doctor today ,he hinted that Riley is at the age of regression.I would like to know if this really happens .Our genetisis also sad around…Continue

Started by Tara Renee Finn in Announcements. Last reply by Lorna Sep 16.

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