If you have Fabry disease or are a family member, please vist our Inspire page from the What Hot section of our website at www.TheNFDF.org and tell us how the Fabrazyme shortage is affecting you.
If you have Fabry disease or are a family member, please vist our Inspire page from the What Hot section of our website at www.TheNFDF.org and tell us how the Fabrazyme shortage is affecting you.
March 9, 2010 at 7:47 pm |
I have been waiting for treatment for Fabry’s disease since may 2009. I am on sick leave from work as I dont feel i can cope with my symptoms and working a streeful job at the same time. I have damage kidneys due to the disease. I also take medication for blood pressure, cholestrol, irritable bowel tablets and pain killers.I am the only person in my family to have the disease fortunatley.
March 9, 2010 at 8:52 pm |
Hi Susan,
I’m sorry you have a lot of symptoms and that you have to wait for treatment. Have you spoken to your doctor about other options. Is your father still living or are you a new diagnosis in your family?
Are you connected to the National Fabry Disease Foundation at http://www.TheNFDF.org? Please sign up for our e-newsletter in the what’s hot section of the home page, register on the website, and you may want to sign-up for the Inspire discussion page although it is off to a slow start. Search Facebook for NFDF and become a fan. I can be reached at jerry.walter@TheNFDF.org. Thanks for posting on the blog. Jerry