You might be asking why create a blog? In hopes to find answers and make people aware of this disease.
This blog will diary "My life with RP" - research, tests, appointments, etc. My goal is for this to help both myself and others understand this disease. Some may be interested, others may think this is a waste of time, to me it will be therapy. Perhaps someday it could help someone else.
Maybe there is someone, or something you might know can help find a cure for this disease I have been blessed with. My Mother has always told me "there is nothing that God gives us that we can not handle" - I am hoping she is right on this one. This blessing is considered a "Rare Disease" Which means there is no cure and no medication that is FDA approved that specifically treats the disease. Many people end up on a cocktail of drugs in the hopes it will stop the progression. My own Doctor has only treated 2 patients with this disease. Depending on the results of my tests I am scheduled for this week, will decide if I will be sent to Virginia Mason to see a specialist in the near future.
First day of research I found a website "How I beat Relapsing Polychondritis" by Sabrina Nelson - She has gone to a Non-dairy, non animal protein diet, which as of Friday April 1st, is now my diet - I have also included Gluten free - I am keeping a positive mind that this is going to help with some of the symptoms.
The hardest part of all of this has been to tell my family, but with their love and support I can beat anything.
Thanks for reading.
God Bless Us All.
Nancy
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