Friday, September 10, 2010

Niemann Pick Type-C & Proventigen

Chris Hempel, the mother of twin girls with Niemann Pick Type-C Disease (NPC), emailed to tell me about Proventigen. I'll give a little background first.

Chris is who we originally found out about Longvida Curcumin from. I'm so thankful we were able to run across their website and find it as it has helped so many in the DS community.

The Hempel's were using Longvida Curcumin for a slightly different reason, for their girls with NPC. NPC is also called Childhood Alzheimer's. It's a horrible, rare disease where children slowly begin to lose the ability to walk, talk, eat and live a normal life. These children die very young too and that's why it's called Childhood Alzheimer's disease. NPC is very rare and therefore there is no cure for it. Addi & Cassi's family do a lot of research and try all kinds of supplements and potential cures, so hopefully something will help these girls and therefore help others with NPC.

NPC is a genetic disease and is caused by accumulation (excess) of Cholesterol in almost every place of the child's body, but the most damaging part is the accumulation in the brain.

There are so many similarities between NPC and Alzheimer's Disease. And because there are so many similarities between AD and Down syndrome, it's very curious to know whether cholesterol plays a role in DS or whether families can find information through DS research for their kids with NPC. Unfortunately, not very much has been researched regarding cholesterol and DS. Although, there is something up with it, as cholesterol is typically high when bloodwork is done in DS. But, then again, Down syndrome is such a multi-faceted, complicated syndrome and there are so many factors that contribute to the syndrome, scientists have a lot of study!

So, back to Proventigen (click here to see it). Proventigen is a new product designed to support brain health. It contains Longvida Curcumin, Pomegranate Extract, N-Acetyl-Cysteine, Vit. B6, Folic Acid & Vit. B12.

It sounds like a very promising, good product. But . . . . . there's one problem that makes me slow to use it or recommend it for DS. It contains N-Acetyl-Cysteine (NAC), which has been seen to cause leaky gut and increased oxidative stress in DS. Neither of which are good things, especially when GI issues and high oxidative stress is already an issue in DS.

If it was all the other ingredients without NAC, I'd want to use it in a heartbeat! The combination of Longvida Curcumin & Pomegranate sound very hopeful. Both of those are excellent for promoting brain health! But, for now, unless other research shows up, we will pass on using Proventigen because of the concern of NAC.



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