In July 2024. I was officially diagnosed with Birt Hogg Dube Syndrome. A rare genetic adult-onset disorder.

For some, the condition presents itself by the development of skin papules, for others it's the development of benign cysts.

Both groups are at risk for developing kidney tumors. 

I made the decision to share my journey because of my frustration with the limited amount of information available.

It then occurred to me that I cannot complain about a lack of information if I am not willing to share my own. So, here I am.

My biggest goal in sharing my journey is to provide some level of understanding of what different people experience, and how to manage since there really isn't anything that can be done.

Most of my doctors unfortunately have never met anyone with this condition, so I am for all intents and purposes my own test bunny. As always, I am here to serve and hope to receive support as we all navigate this journey. 

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