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We really appreciate the support that we are getting from all around the world in our fight to get treatment for Pompe here in New Zealand. Thank you everyone, it's great to know we are not alone!
4 Comments
9/2/2011 04:14:46 am
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.
Sabrina
Brad Crittenden
10/2/2011 01:39:11 pm
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.
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! Your comment will be posted after it is approved.
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