Desmoid tumors (aggressive fibromatosis) arise from fibroblast cells that proliferate excessively.  Fibroblasts are found throughout our body in connective and soft tissues.  Although desmoid tumors are not usually life-threatening, their clinical course is unpredictable and can be life-altering.  It’s important that patients be evaluated and treated by a desmoid tumor expert, typically a specialist in sarcoma care.  Major academic medical centers can help support patient care through a multidisciplinary team that includes medical and surgical oncology, interventional radiology, and pathology.  In addition to conventional medical support, there are complementary lifestyle approaches that can support one’s healing and well-being throughout the desmoid journey.  A wholistic approach to healing improves a person’s quality of life and innate healing abilities.

My diagnosis with a desmoid tumor was life-changing in many ways.  For years it was a confusing, isolating journey, and most of what I learned was through trial-and-error.  I wish I’d had someone to help me navigate those difficult years and discover what I most needed to support my well-being.  Unfortunately, because desmoid tumors are so rare, resources are limited, and it can be difficult to find people who understand what living with this disease is like.  That’s why it’s my passion to come alongside fellow “desmoidians” (reference to one of the desmoid community’s Facebook groups!) to help provide this much-needed support.  Depending on my client’s individual needs, we will address dietary habits, movement, sleep, physical environment, professional development, relationships, spiritual & emotional health, and work-life balance.  Despite the obstacles and the unknowns, I encourage you to take things one day at a time and make the most of your one wild, beautiful life.

Don’t go through this alone—please reach out for a free consult to see if working together is a good fit for you!

Helpful Resources:

• https://dtrf.org/
• The Global Consensus Paper on the Management of Desmoid Tumors
• Desmoidian group on Facebook