If you have Fabry disease or are a family member, please vist our Inspire page from the What Hot section of our website at http://www.TheNFDF.org and tell us how the Fabrazyme shortage is affecting you.
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Fabry Disease Blog 
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