Dec. 3, 2021
Posted by Rohan Narayanan
Once, I was an intelligent, well-traveled and active African American entrepreneur in my middle 40’s who had opportunities to do wonderful things in the world. My passion was to help disabled people of all ages improve their lives. I was fortunate enough to be an icon as the first woman in technology to educate thousands of individuals in university and Fortune corporations, as well as offering my expertise in state, federal and international consulting.
Further aspirations ended when I was diagnosed with stage IV Leiomyosarcoma (LMS) pelvic bone cancer and given 3-6 months to live. I am just beginning to cope and on the road of recovery with plans to start a new life. I have a story to share and the opportunity to volunteer as a rare disease and cancer patient advocate has given me a purpose. In addition to being a patient advocate, I use my platform to share education and hope and discuss what it is like to survive a rare disease by hosting my show, “A Talk with Dianna ‘Survivor.’”.
Being diagnosed with Leiomyosarcoma in 2004 was a death sentence. In addition, the survivor rate of this cancer was low, especially in stage IV. It was a challenge to be unable to walk for years and rely heavily on pain medications. I still suffer many side effects and another rare diagnosis, which is not yet understood by my team of medical professionals. It is difficult having “chemo brain,” especially when I look back at my achievements before LMS.
The future is bleak as to all other rare disorders. If they lack funding for research and development, many people will die or suffer with several types of disabilities, which the health system is not yet equipped to deal with. It matters to tell your story because no one, including other rare disease patients, would know otherwise.
The National Organization for Rare Disorders (NORD) is committed to telling the stories of patients and families with rare or undiagnosed diseases and helping them live their best rare lives. If you would like to share your story, contact NORD here.