April 2013 Moms
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Wear Jeans Tomorrow!
OhSewCrafty
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Tomorrow is Rare Disease Day and the Global Gene Project runs a "Wear that You Care" campaign to spread awareness about these rare diseases. The ribbon awareness "color" is denim (Get it? Genes = jeans) so its all about wearing jeans.
It is a little known awareness day, but that's the point. There are over 6,800 diseases that are considered rare and they affect 1 in 10 Americans. That's a lot of people, but with everyone having a different, lesser known disease they remain largely unknown.
Tomorrow is the day for families affected by a rare disease to share their story and spread awareness. If you or someone in your family are affected by a rare disease feel free to share your/their story!
In October, Ginny was diagnosed with Congenital Adrenal Hyperplasia. I wrote about it on my blog, here.
It is a little known awareness day, but that's the point. There are over 6,800 diseases that are considered rare and they affect 1 in 10 Americans. That's a lot of people, but with everyone having a different, lesser known disease they remain largely unknown.
Tomorrow is the day for families affected by a rare disease to share their story and spread awareness. If you or someone in your family are affected by a rare disease feel free to share your/their story!
In October, Ginny was diagnosed with Congenital Adrenal Hyperplasia. I wrote about it on my blog, here.
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Re: Wear Jeans Tomorrow!
Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia
Charlie DX Specific Antibody Deficiency & ASD
Genetic diseases suck because there can never be a cure (you can't exactly go and change your entire genetic makeup), but the good thing is that scientists are always working on new treatments. My husband's really fortunate because a clotting factor medication was invented while he was still rather young, so he doesn't have to get human plasma transfusions anymore. There's also a new cutting-edge treatment (still in development) that uses modified viruses to produce the clotting factor in the body of a hemophiliac, so instead of having to treat himself two or three times a week, he could go get this treatment and it would last for several months.
My husband is ineligible for this treatment (he also has hepatitis C--had an infected plasma transfusion when he was really little), but there's hope that it can pave the way for more treatments.
Science is so freaking cool...
Ginny DX 21-Hydroxylase Deficiency Congenital Adrenal Hyperplasia
Charlie DX Specific Antibody Deficiency & ASD