Heidi Williams:  

Life I was diagnosed in April of 2002 with a rare, hereditary genetic disorder that is slowly causing my lungs to self-destruct. It's called Alpha-1 Antitrypsin Deficiency, and there is no cure. Like so many other diseases, it's just a waiting game until someone breaks the code. While I am taking steps to insure that I stay as healthy as possible, there may come a time when I will have to decide whether or not to be evaluated for a lung transplant. Right now, I have to gain at least 15 pounds to even be considered. Yeah, it's either hang out at BK and eat artery clogging Whoppers, or stay as I am and not get evaluated. It's a roll of the dice, either way, as transplantation is still a 50/50 proposition. I do have a mobility scooter that helps me get around. I love the renewed independence, and I still make my kids run to keep up with me! In August 2003, and again in February 2004, my children, now ages 24 and 22, were victims of genetic discrimination, and I helped campaign for Congress to pass legislation making it illegal for anyone to discriminate against someone on the basis of genetic information. Thankfully, GINA (the Genetic Information Nondiscrimination Act) came before the floor of the House on April 25th, 2007, and passed by a vote of 420-3. Then, finally, after much effort from everyone involved, the Senate put GINA forward for a vote on April 24, 2008, and it passed with a unanimous vote of 95-0. Thank you to everyone who contacted their representatives to help make this important legislation a reality. GINA (Genetic Information Nondiscrimination Act) was signed into law May 21, 2008, and became a law May 21, 2009. *I will add this: My father is finally, at age 85, feeling some effects of Alpha-1. He was denied payment for medication because his insurance company 'didn't like the disease.' Well...Expand for more