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Archives for: July 1st, 2022

Christina’s Lease on Life

Written by Julie Ostroff on July 1, 2022
Christina smiling in a pink sweater with McDonald's food on a table in front of her.

This story is about me, my diagnosis with a rare disease known as chorea-acanthocytosis and my experience of undergoing deep brain stimulation (DBS). The onset of the disease was in 2015, around the time that I turned 30 and was living on my own in Cape Town.

My journey with… Read More

Giving Back to the Community: Suzy’s Rare Journey

Written by Julie Ostroff on June 24, 2022
Suzy softly smiling in front of a blue background.

I am a rare disease patient who has lived with reflex sympathy dystrophy syndrome (RDS) and complex regional pain syndrome (CRPS) since 2007. In 2013, I was diagnosed with Ehlers-Danlos syndrome type IV, and in 2019, I had surgery for cholesteatoma. It is a benign auditory tumor that reoccurs 50%… Read More

Rare Disease Day: Riaan’s Story

Written by Maia Craig on February 17, 2022
A photo of Riaan and his mother

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Riann’ s journey with Cockayne Syndrome and his family’s wishes for the rare disease community. If you want to share your rare… Read More

Rare Disease Day: Bradley’s Story

Written by Maia Craig on February 9, 2022
A photo of Bradley wearing a blue and white shirt and mint green shorts

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Bradley’s journey with Infantile Myofibromatosis. If you want to share your rare story in honor of Rare Disease Day, visit NORD’s Read More

Rare Disease Day: Yara’s Story

Written by Maia Craig on February 1, 2022
A photo of Yara

Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Yara’s journey with Jordan’s Syndrome and her family’s plan to raise awareness this #RareDiseaseDay. If you want to share your rare story in honor of… Read More