Fibrous Dysplasia

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Manage episode 295044294 series 2158728
By Lita Tomas. Discovered by Player FM and our community — copyright is owned by the publisher, not Player FM, and audio is streamed directly from their servers. Hit the Subscribe button to track updates in Player FM, or paste the feed URL into other podcast apps.

This week's episode discusses a rare condition that turns bone into fibrous tissue. Fibrous Dysplasia can be devastating, but our guest, Brittany is taking it all in stride and is continuing her advocacy work with us by sharing her story. Without further ado...here's Brittany!

I am a 36 year old woman from Indiana. I have a rare disease called Fibrous Dysplasia. It turns my bones into fibrous tissue. There is no cure and surgery is our only form of treatment. I have had 12 surgeries so far. At 13, I had to get a tooth pulled and after a few months an uncle of mine noticed the swelling from the extraction never went down. I then had a biopsy confirming FD. The following couple of years I started to experience debilitating headaches that led to a brain tumor being found and my bone disease was actually the reason for it forming. Surgeries started immediately after that diagnosis. The disease can cause deformity with our bones being able to grow at anytime for the rest of our lives including tumors and cysts as well. I have it in my face so of course my face changed quite a bit since I was a teenager. It was very hard to accept how things could change at anytime and took me about 20 years but I now see all those scars and growths as my uniqueness, my beauty. I wish I knew in the beginning how much I could gain from accepting myself and my flaws. Pain also took over my life for a good 20 years and was hard to accept the fact that I would live with this pain every single day for the rest of my life. That also took 20 years and I chose to finally stop just surviving and to start living as well. So now I use my pain as my push to advocate. It allows me to use my pain in such a beautiful way. It all has made me who I am and the worst parts are also all a part of my story and something that gives me so much strength and courage. Due to my disease I also lost all my teeth 5 years ago and it took a great toll on me. I am use to deformities and changes but not for having no teeth. Because of financial conditions i still do not have any teeth but i try each day to find help in getting new and to keep living happily despite it all. It also has became a part of my journey.

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