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

Michelle Lucas left a comment for Michelle Lucas
"Hi Mary. Do u have a child with LNS? If u need to chat please feel free to contact me at mllucas72@gmail.com."
Friday
Kristine Beck and Amy Laws are now friends
Jul 21
Amy Laws left a comment for Kristine Beck
"Hi Kristine!  My son Michael (Mikey) is 17 also!  We live in Columbus, Ohio and I was wondering where you guys are?"
Jul 20
Bene Williams left a comment for vanessa mendiola
"My son Isaac is ten and we live in Austin. I'm interested in meeting other LNS families in our area."
Jul 12
Bene Williams shared a profile on Facebook
Jul 12
Lorna posted photos
Jul 7
Lorna replied to Tara Renee Finn's discussion Anyone with an LNS son over 18.
"Hi Tara Callum is 18½. He is perhaps not as mature as many of his able bodied peers but he continues to make progress. His group of drinking buddies are in their early twenties and he has been completely accepted into the group. In terms of…"
Jul 7
Samantha Heslop and Giles Edward martin are now friends
Jul 4
Tara Renee Finn replied to Tara Renee Finn's discussion Anyone with an LNS son over 18.
"Thank you for the encouragement . We have a lot going on . Rileys hip is starting to rub his pelvic bone , and the scoliosis is getting to the point of deforming his ribs .The concern is eventually it will crush his organs if not repaired and it is…"
Jul 2
Joan Martin replied to Tara Renee Finn's discussion Anyone with an LNS son over 18.
"Hi Tara We were given similar information about regression . But Bearing in mind that everyone is an individual, our son has continued to mature, develop and learn - he is now 23. He is working part time for a disabled children advocacy group doing…"
Jul 1
Neil left a comment for Tammy
"Hello Tammy...sorry for the late reply and thanks for adding me to your friend. I'm rarely in this site. Sorry to hear that your son was just diagnose with LND. My son will be 5 yrs old this Nov and he was diagnosed when he was 2. We're…"
Jun 30
Neil and Tammy are now friends
Jun 30
Tara Renee Finn posted a discussion

Anyone with an LNS son over 18.

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 17-18 this would happen .Any info would help . Thank You , Tara FinnSee More
Jun 26
Tara Renee Finn replied to Berlingo's discussion Janek Deep Brain Stimulation
"Hi , My name is Tara . I have 2 sons with LNS . Riley 17 and Ronnie 7.We saw a new neuoro doctor today ,he thinks Ronnie would be a good candidate for DBS . I was wondering if anyone could update me on their success with DBS.    …"
Jun 26
REBEKAH LEONG is now a member of LND Net
May 21
baltimoremike updated their profile
May 19
 

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

Anyone with an LNS son over 18. 3 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 Jul 7.

Janek Deep Brain Stimulation 3 Replies

Dear all,Janek again had DBS surgery on the 26th of february. About one year before, all devices had to be removed again after severe infection. Now we hope that there is no infection this time.…Continue

Started by Berlingo in Announcements. Last reply by Tara Renee Finn Jun 26.

Suggestion help

I thought I would post this just to see what kind of ideas people have, it seems most here are really really creative here. Next weekend I'm going to a picnic and want to conceal my lower half in a…Continue

Started by baltimoremike in Handyman's Corner May 19.

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