Hello,
I am starting this blog for those that are interested in information and/or discussions regarding this level of the disease. My understanding is that there are only around 900 of us in the United States that are actually diagnosed with this level (tarda) of the disease. I felt that if we were able to discuss or share our stories or information on what we have lived through it might help others. There isn't a whole lot of information out there and from my research there isn't one doctor out there that specifically deals with our level of the disease. Most of the information or doctors that do deal with this disease only deal with the other levels, not the adult onset.
I ask you to share your information or questions so that we may be able to help each other work through or live with this disease.
May you have a wonderful day, knowing that there are other's out there like you and it's ok to be a person with the diagnosis of Osteopetrois Tarda.
Peace,
Stephanie
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