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October 29, 2021

TOPIC: Patients & Members, Patient Stories

Five Disorders: Dee’s Rare Story

Posted at October 10, 2021 09:00 am by Rohan Narayanan

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 later, I go on. The chronic EBV destroys my immune system, so… Read More

October 15, 2021

TOPIC: Patients & Members, Patient Stories

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

Posted at October 10, 2021 09:06 am by Rohan Narayanan

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. Climbing back up, lifting my pant leg, the tear… Read More

October 5, 2021

TOPIC: Patients & Members, Patient Stories

Saida’s Story of Strength

Posted at October 10, 2021 09:06 am by Rohan Narayanan

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 else struggling can find comfort and support in my… Read More

September 30, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story

Posted at September 9, 2021 09:30 am by Rohan Narayanan

I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone. Feeling alone when faced with a diagnosis of a rare disease… Read More

September 30, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Timing and Access: Katherine’s Rare Cancer Story

Posted at September 9, 2021 08:30 am by Rohan Narayanan

I was a healthy 27-year-old with no underlying risk factors when I was diagnosed with appendix cancer. 

One evening, I started cramping in my abdomen. I thought nothing of it until the intensity increased and I could barely sit upright or walk. I called my primary care provider and she recommended I go to the emergency room, as it could be appendicitis. I was nervous to go,… Read More