IG Living to be super responders to questions and others IG needs. They all seem to me to be super-smart, proactive and knowledgeable people! Many of the staff either have immune issues or have kids with same. That makes a BIIG difference in true understanding about what IVIG does for us and how important it is to our quality of life.
One thing to think about tho is how best to get IG accepted as an ON-Label use for acquired immune disorders...there are many of us who once we reach that 'magic' age could definitely suffer even more because it's not covered unless you've got the bucks to pay whopping deductables...this site seems local, BUT it is national. The director has Multifocal Motor Neuropathy and was a lobbyist on the Hill...He knows the in's and outs, and has a solid national board and medical consultants. Please take a look at this site and start educating folks who make the decisions: http://neuropathyactionfoundation.org/index.htm
We can't expect others to do that work that we can easily do? So let's go do it!
Pono, I am truly, truly glad that you are getting some help you need! 's - j