40029-full
HempelTwin1
Data Quality: 1 star
  • Sex: Female
  • Age: 9y
Condition: Niemann-Pick
Quality of Life:
  • Mental: Unreported
  • Physical: Unreported
HempelTwin1
Female, 9 years
Reno, NV
Primary Condition
Niemann-Pick
First symptom
Diagnosis

About HempelTwin1

I'm a health "advocist" for my children - advocate + activist = advocist! My identical twin daughters, Addi and Cassi, have an ultra rare a fatal cholesterol storage disorder called Niemann Pick Type C disease. It is often referred to as the "childhood Alzheimer's." Children born with NPC disease inherit double genetic mutations on a critical cholesterol gene located on Chromosome 18. While NPC is an ultra rare disease, every person in the world is born with the NPC gene and this gene regulates human cholesterol metabolism at the cellular level. Website: http://www.addiandcassi.com

Profile Activity
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Member since: Dec 13, 2011 Last Login Jul 11, 2012
This account is maintained by a caregiver.