We need Federal Grant money to supplement the generous private donations to ASAP.org.
In 2008, our Congress authorized $17.2 billion in Federal Grant appropriations. It’s time they share the pork with the zipper heads.
Please contact me if you're willing to help me lobby. I have no experience, but I'm willing to learn.
We need research!!!!!!!!!!!! Last week!
Showing posts with label RESEARCH. Show all posts
Showing posts with label RESEARCH. Show all posts
Wednesday, September 10, 2008
MY 3 BEAUTIFUL CHILDREN
I had 3 children during my pre-diagnosis days.
My youngest (Grace) was 4 when I had my surgery. Upon my diagnosis, I became very concerned about whether Chiari is genetic. I was told that there is only a very small percentage of familial incidence; less than 12%, with a then 50% chance of that gene ever becoming functional. I was told that there was no need to test my children unless they showed very obvious signs of ACM.
They were wrong. I should have had them tested sooner. All 3 of my children have varying degrees of Arnold Chiari Malformation, Syringomyelia, retroflexed odontoid, basilar invagination, Spina Bifida Oocculta and Ehlers Danlos Syndrome.
I will tell each of their stories during the next week.
Too little is understood about the genetics behind these conditions. The 8-12% familial incident rate needs to be looked at more closely. I would bet my titanium cranial plate that this number is hugely underestimated. While I know 8-12% is the actual percentage found among patient populations, I challenge how hard they’re actually looking at their patient’s families. All too often I hear symptomatic patients referred to as having “incidental asymptomatic Chiari” simply because doctors don’t understand the wide array of symptoms associated with Chiari.
My youngest (Grace) was 4 when I had my surgery. Upon my diagnosis, I became very concerned about whether Chiari is genetic. I was told that there is only a very small percentage of familial incidence; less than 12%, with a then 50% chance of that gene ever becoming functional. I was told that there was no need to test my children unless they showed very obvious signs of ACM.
They were wrong. I should have had them tested sooner. All 3 of my children have varying degrees of Arnold Chiari Malformation, Syringomyelia, retroflexed odontoid, basilar invagination, Spina Bifida Oocculta and Ehlers Danlos Syndrome.
I will tell each of their stories during the next week.
Too little is understood about the genetics behind these conditions. The 8-12% familial incident rate needs to be looked at more closely. I would bet my titanium cranial plate that this number is hugely underestimated. While I know 8-12% is the actual percentage found among patient populations, I challenge how hard they’re actually looking at their patient’s families. All too often I hear symptomatic patients referred to as having “incidental asymptomatic Chiari” simply because doctors don’t understand the wide array of symptoms associated with Chiari.
Subscribe to:
Posts (Atom)