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https://www.loveneversinks.org/
Love Never Sinks is a 501c3 non-profit organization founded to offer assistance to individuals and their families living each and every day with Lesch-Nyhan Syndrome. Our purpose is to help.....We support the individuals and their families first with love and compassion, we will …
https://www.thinkgenetic.com/diseases/lesch-nyhan-syndrome/organizations/8035
There are support groups for Lesch-Nyhan syndrome. Some are specific for the condition, and some are for features of the condition. They are the following: Lesch-Nyhan Disease International Study Group. 210 South Green Bay Road. Lake Forest, IL 60045 . Phone: (847) 234-3154.
https://www.loveneversinks.org/protective-devices
Love Never Sinks is an advocacy and support group for individuals and their families dealing with Lesch-Nyhan Syndrome
https://rarediseases.org/rare-diseases/lesch-nyhan-syndrome/
Individuals with Lesch-Nyhan syndrome have been reported to benefit from behavior modification techniques designed to reduce self-mutilating behaviors, but real success is unusual. Children with Lesch-Nyhan syndrome usually require physical restraint at the hips, chest, and elbows so they do not injure themselves.
https://www.thesunchronicle.com/sports/local_sports/degirolamo-nyhan-to-be-honored-by-mass-women-in-sports/article_1a0725c6-b0de-5a5b-a6fc-c5c2285325e4.html
Nyhan, with the support of Mansfield High Athletic Director Joe Russo, was nominated because of her work with student-athletes at the school throughout the year. Through her devotion to athletics,...
https://contact.org.uk/advice-and-support/medical-information/conditions/l/lesch-nyhan-syndrome/
Management of muscle tone focuses on oral treatments with baclofen or anti-dystonic agents such as trihexyphenidyl. Treatment with botulinum toxin A injections can also be helpful. There are a few centres in the UK and internationally that are looking at using deep brain stimulation treatment in young people with Lesch Nyhan syndrome.
https://www.facebook.com/LESCH-NYHAN-National-Support-and-Advocacy-Group-531675683666742/
LESCH NYHAN National Support and Advocacy Group. 6 likes. To create widespread community awareness about Lesch-Nyhan, for families and healthcare professionals, by …Followers: 6
https://medlineplus.gov/ency/article/001655.htm
Lesch-Nyhan syndrome is a disorder that is passed down through families (inherited). It affects how the body builds and breaks down purines. Purines are a normal part of human tissue that help make up the body's genetic blueprint.
https://ghr.nlm.nih.gov/condition/lesch-nyhan-syndrome
Oct 29, 2019 · Lesch-Nyhan syndrome is a condition that occurs almost exclusively in males. It is characterized by neurological and behavioral abnormalities and the overproduction of uric acid. Uric acid is a waste product of normal chemical processes and is found in blood and urine.
https://en.wikipedia.org/wiki/Lesch-Nyhan_syndrome
Lesch–Nyhan syndrome (LNS) is a rare inherited disorder caused by a deficiency of the enzyme hypoxanthine-guanine phosphoribosyltransferase (HGPRT). This deficiency occurs due to mutations in the HPRT1 gene located on the X chromosome. LNS affects about 1 in 380,000 live births.Specialty: Endocrinology
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