Dementia is something that is usually associated with older people. However, children, teenagers and young
adults can experience dementia as a result of a number of rare diseases and conditions. Niemann-Pick Disease
Type C (NPC) is an example of one of these diseases, and one of its main symptoms is dementia. (Hinton et al, 2005)
If You Donât Know What You Want, It Doesnât Matter How Many People 'Like' You: Deciding how to measure your soci... http://t.co/vNZnTrOI17 mins ago
Thich Nhat Hanh: "Every day we do things, we are things that have to do with peace. If we are aware of our life.... http://t.co/NmEgKQRo2 hours ago
World Rare Disease Day 2012 is coming up on February 29th. Consider these staggering statistics. Each year, 139 BILLION U.S. dollars are invested in medical research — much of it from tax payers Each year, 800,000 papers are published in medical journals by scientists Each year on average, ONLY 21 new drugs are approved by […]
My life grows more surreal by the day. Four years ago, I was told that my eight year old identical twins have a fatal genetic cholesterol disease called Niemann Pick Type C (the “Childhood Alzheimer’s”) and they would likely not live to see their 10th birthday. Now I have learned from top virus scientists that […]
KC Metro Family Tries to Cope With 'Childhood Alzheimers'
—Click on the picture to go to the full story……
Video: (I will have to update this link. They have redirected the video)
If you tell someone that your child suffers from “Niemann Pick Disease Type C,” most people would have no idea what you’re talking about.
But if you tell them that your child suffers from “Childhood Alzheimers,” those people would begin to understand the seriousness of your child’s condition.
Niemann Pick disease is a rare and fatal disease that robs a child of both their past and their future, and for one metro family the condition is a double tragedy.
As a society we are somewhat familiar with common diseases such as Cystic Fibrosis, Multiple Scleroses, and Muscular Dystrophy.However, a name like, “Niemann-Pick Type C disease” leaves you wondering.
This genetic, neurodegenerative disorder strikes children through accumulation of cholesterol and other excess fats in the cells of the liver, spleen and brain. When brain cell function is blocked NP-C children lose coordination, stumble, fall and eventually need to be in wheelchairs, sleep in a hospital bed and utilize other adaptive equipment. As the disease worsens other devastating symptoms develop including loss of the ability to speak, swallow, laugh, remember, and often seizures occur. The health of children with NPC deteriorates until ultimately, the disease claims the child’s life. It is estimated that the diagnosis of this disease affects approximately 500 people worldwide (NPC).
NPC has been initially diagnosed as a learning disability, mild retardation, “clumsiness,” and delayed development of fine motor skills. It is not uncommon for a family to spend several years seeking a diagnosis before NPC is identified.
NPC is always fatal. The vast majority of children die before age 20 (and many die before the age of 10). Late onset of symptoms can lead to longer life spans but it is extremely rare for any person with NPC to reach age 40.
Recent Comments