Like I mentioned on my previous post, my friend wrote an interesting insight about what Pompe patients now face. A chance for a longer and brighter future.
A lot if not most of Pompe patients were once faced with a bleak outlook regarding their future. Up until a few months ago, a treatment wasn’t available in the market. However things change. Now, Pompe patients have a new ray of hope, in the form of Myozyme.
While we’re not certain how well Myozyme can improve the quality of life of someone suffering from Pompe, signs indicate to at least some improvement. To a certain extent I think we can safely say that Pompe patients are better off with it than without.
Now we Pompe patients are faced suddenly with the fact that there might be a future. It’s great but there are things now to consider that we previously probably didn’t bother to think about.
First, how do we continue to fund our Enzyme Replacement Therapy. This will be a life long treatment until something better comes up (Gene Therapy anyone?). Second, finances. Some patients gave up on their career, work because they got weaker. Now that strength is slowly coming back, a career and work is a legitimate concern. Family, as you grow older, having someone to spend the rest of your life with would be great. Now some people might say this is unfair, why subject someone to a life with a partner with Pompe. Simple answer why not? If someone loves you and understands the pros and cons of spending their life with you give them the chance. It would be unfair to push them away. Of course this means a lot of patience and understanding from both sides. Retirement. With Myozyme giving us the prospect of living longer we need to worry about the same things “normal” people do. One of them is retirement. Thank God I’m still a long ways from that.
These are just some concerns that now face Pompe patients. Concerns that are normal for ordinary people but for us it’s something new. We need to deal with them as with most people. Life is indeed difficult but it’s definitely worth it.