Allyson...I think you do an excellent job of articulating the seriousness of pompe disease and holding the PM and Pharmac accountable for an answer. We can only hope & pray that the powers that be are compelled to show their humanity and common sense on 2/25/11 to decide in your favor. There are many of us in the pompe community who I know would support you (all of you) by writing letters & testimonials explaining how the drug has stabilized or improved the medical condition our loved ones or ourselves to show the efficacy of the drug in late onset patients. Let us know if there is anything we can do to help you.
Mom to Zack (15) with pompe disease
Thank you so much for your comments. I know that as a Mum to Zack who has Pompe, you really understand what it is that we are dealing with on a day to day basis. It is very comforting to know that people from all around the world are with us on this journey. And at the same time, i hope you know that we are with you, Zack, and your whole family.
It's hard to believe the crap that a person has to go through, just because they are unfortunate enough to have a disease that's not common. Not only do we have to live with a cruel disease, but we have to live with a system that is often just as cruel. You shouldn't have to beg for a life-saving treatment that's readily available. That's the last thing you need.
It might not seem like it now, but I'm sure there are many people that are working very hard to get this approved for you. I hope with all my heart that they prevail.
Keep up the fight.
Adult-onset Pompe disease
Thank you Brad! :) It can be very wearing just having this disease, and then on top of that having to fight to save your own life. You know exactly how that goes, you've been there done that!
I'm lucky to know someone like you who knows exactly what this is like. Thank you :)