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Archives for: December 27th, 2021

Far From “Normal”: Brenda’s Rare Disease Story

Written by Rohan Narayanan on December 27, 2021

I’m as “normal” as anyone else. I look completely “normal” (besides being in an orthopedic brace), I act completely “normal,” and my life is completely “normal”. I have been married for 40 years and have two adult children and three grandchildren. I have worked with my husband in his private optometry practice for 20 years and help with the daily care of our 11-year-old grandson. My life is full, happy, active and busy – as “normal” as I may… Read More

Dianna’s Story as a Rare Survivor

Written by Rohan Narayanan on December 3, 2021

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… Read More

Five Disorders: Dee’s Rare Story

Written by Rohan Narayanan on October 29, 2021

I have five rare disorders: Chiari malformation, intracranial hypertension, chronic Epstein-Barr virus (EBV), fibromyalgia, Hashimoto syndrome, along with a plethora of other illnesses. An infectious disease doctor once told me that I was a poster child for the medical field. However, my journey with rare disease began far before I was diagnosed in 2009. 

Living with a rare disease makes you grateful for everything that most people take for granted. Four brain surgeries… Read More

From a Horse to a Zebra: Dana’s Rare Disease Story

Written by Rohan Narayanan on October 15, 2021

I was five years old, excitedly cheering on my mother at her softball game at City Park ball fields in Fort Collins, Colorado. She hit the ball and I jumped and cheered with the others in the bleachers. Then, my life changed. I slipped and fell through the bleachers…. Read More

Saida’s Story of Strength

Written by Rohan Narayanan on October 5, 2021

I have been diagnosed with a rare chronic genetic disease called partial trisomy 8Q duplication syndrome since birth and I was also recently diagnosed with hidradenitis suppurativa (HS). My life has been full of challenges, and I want to bring awareness to what I go through so that anyone… Read More