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

Caroline and Tammy are now friends
Wednesday
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…"
Tuesday
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."
Tuesday
Jean-Baptiste Farcet is now a member of LND Net
Tuesday
Rasheedah A. Mahali replied to Tara Renee Finn's discussion Anyone with an LNS son over 18.
"My daughter, Rasheedah, is 34 years old. I am not sure what your doctor meant by "regression". Rasheedah is a very sociable young woman who enjoys hanging out with her family and companions. We go out to the movies almost every week-end…"
Sep 10
Rasheedah A. Mahali and Zach Ludlow's Family are now friends
Sep 10
Rasheedah A. Mahali posted a discussion

DBS surgery outcome

We would like any feedback from parents, friends, and/or associates who have had or know of anyone who has had this surgery. My daughter, Rasheedah, and I, are desperately in search of people who know anyone, with LN, who have had this surgery and would like to share with us what their experience has been like. The Neurosurgeons in our area, NJ, have not, to our knowledge, performed this surgery on an LN client. They are hesitant to perform this surgery on my daughter because they have not…See More
Sep 10
Rasheedah A. Mahali replied to Dexter's discussion DBS Surgery
"My daughter, Rasheedah, and I, would like to hear from you about the DBS surgery and how your son is doing since the surgery. Rasheedah is 34 years old and we have been trying to get this surgery for the past 5-6 years. We were close to having the…"
Sep 10
Rasheedah A. Mahali posted a status
"What are you up to?"
Sep 10
Rasheedah A. Mahali posted a status
"What are you up to?"
Sep 10
julie glover replied to Tara Renee Finn's discussion Anyone with an LNS son over 18.
"hi tara my son Royston is now 34yrs old, i'm not sure if he is one of the oldest with LNS, he had his teeth removed when he was 11yrs and has been fine throughout the years, he has some behaviour problems (swearing) ! but he's a lovely…"
Aug 21
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."
Jul 25
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
 

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. 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 on Tuesday.

DBS surgery outcome 1 Reply

We would like any feedback from parents, friends, and/or associates who have had or know of anyone who has had this surgery. My daughter, Rasheedah, and I, are desperately in search of people who…Continue

Started by Rasheedah A. Mahali in Caregiver Exchange. Last reply by Lowell T. Anderson on Tuesday.

DBS Surgery 3 Replies

Hello Everyone, Just an update on the DBS surgery for Amyas. The surgery was carried out on the 26th and when the surgeon made the opening to remove the old stimulator, he found that the connecting…Continue

Started by Dexter in Caregiver Exchange. Last reply by Rasheedah A. Mahali Sep 10.

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