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Hello & Welcome!

Hi folks!

My name is Christina, and I have desmoid-type fibromatosis.

Don’t know what that is? Most people don’t! Let me break it down for you. DTF is a rare condition that impacts 2-4 people in 1 million each year. As one of my doctors put it, I’m “the rarest of the rare.” So rare in fact that I like to call myself the unicorn of cancer patients! Some people consider it cancer, some don’t. (In fact, even my team of doctors disagrees on that point.) The bottom line is that it’s really important that DTF is treated just like cancer – specifically, sarcoma. My desmoid is located within my chest wall, behind my right clavicle.

Bottom line, I’m 28 and my life is not going to look typical anymore. (Let’s be real, I’ve been typical before, so why start now?)

You may have stumbled on this page because you know me or my family, heard about my story, or perhaps you yourself are a Desmoid Tumor patient.  This blog will document my recent diagnosis, updates on my treatment, and my continued adventures. Please keep in mind that Desmoid Tumors are rare and much about them is still a mystery. My experience is going to be different from the next patient’s.

Regardless of how you landed on this page, I invite you to reach out and say hello! If you’re a Desmoid patient, I want you to know you’re not alone. I’ve found comfort and advice in Facebook groups and want to offer my own resource. You’re welcome to contact me at any time by using the “Contact Me” link above.

Thanks again for visiting, and I’ll be updating soon!

Christina