We all heard of dementia and nuerodegenerative diseases like Alziehmers and Parkinson's and if you think that stuff is only for grannies and abuelos, think again. While studying genetics in biology, I came upon this extremely rare disease that strikes Nuerotypical older kids and teenagers called Lafora Disease with bad relentless siezures and a rapid and very serious dementia much like Tay-Sachs in Jewish babies and worse than even Alziehmers and it (Lafora) kills it's victims on or around their 25th birthday. Like Childhood Disintegrative Disorder, Lafora is a type of Childhood Dementia. I read one story and it made me cry (http://www.chelseashope.org/jessica-nic ... a-masoner/). The teen in this story, once a completly normal life living the cool robust groovy lifestyle of a NT teen planning for the bright future just a step away with all great possibilites, was suddenly mugged of all of that life and it's possibilities and all her milestones skills within a matter of months.
Both of my grandmothers both have Alziehmers and they are not as bad as that poor girl or other Lafora teens. One of my grandmothers who lives in the same megalopolis (South Florida) as me and my family has had Alziehmers since like 1999 and she is still alive AND well. My family picks her up every Saturday (this upcoming Saturday, my family is picking her up again) and her latest condition is that she still sings, walks, does some stuff for herself, and she rarely, if any at all, has siezures. A kid who started Lafora in 1999 would of already been dead for like 4 years now. My other grandma in New Jersey, who also has Alziehmers, is worse than my grandma in South Florida but still much milder than these Lafora teens. My New Jersey Grandma has had Alziehmers since 2007. During onset, she went with my family to Disney World for Thanksgiving. I was 12 years old at that time, and I asked my NJ Grandma to buy me something from a store in Epcot and she completly forgot to do so. From that point on, she forgot more and more but progressed like the slowest snail in the world compared to the Lafora teens in these stories. Yeah, my New Jersey and has had siezures, but still very little compared to the Lafora teens. Now my New Jersey Grandma is in a wheelchair but she still speaks, even makes jokes, and still eats regular food.
With Alziehmers, not only the progression is slow but also at the time of onset in most cases, at least you have completed your life and even left a mark in this world like Ronald Regan was very accomplished actor and Great US President before he got Alziehmers, and again wasn't that severely progressive. Lafora happens to not only come in the most happiest flouridshing time of life but also mugs it's victims quickly and very severly. Thankfully, no one I know or aquaint has this devestating Lafora.
However, reading the stories made me more enraged and more furiously determined to find a cure for all these rare diseases among Marfan Syndrome, Cystic Fibrosis, Angelman Syndrome, and Tay-Sachs Disease. And what I say in all is Autism is not a disease, we are just quirky. Now rare diseases like Lafora or Cystic Firbosis are REAL diseases we have to tackle. They are drowned out by organizations that advocate conditions that affect a lot more people, like Autism Speaks. And we know how we feel about Autism Speaks very well. Rare diseases when it comes to people make them think they parictally don't exists of course until he/she or his/her loved one gets it. Collectively, ALL rare diseases affect more people than Autism, Cancer, and AIDS combined. Now that is a big problem piled up from the ignorance by the "rare" term. When I become a Marine bioengineer, I am going to the deep to find stuff to erase these rare diseases. Now, attention and funding for science is the problem and who else can help bring more real hope, YOU! So donate if you like. And spread awareness around this site and to people you know.
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RAADS-14 score is 23.
31 May 2015, 12:14 pm
