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Archives for: July 29th, 2022

Rebekah’s Rare Story: How Mrs. Massachusetts Petite Spreads Hope & Awareness

Written by Julie Ostroff on July 29, 2022
Rebekah standing in front of a pink background wearing a crown and a sash that reads "Petite USA Mrs. Massachusetts." Image reads "Rebekah Britto Platform: National Organization for Rare Disorders (NORD) 'A disease may be rare but hope should not be.'"

I’m Rebekah Britto, Mrs. Massachusetts Petite 2022, and I have both Chiari malformation and Ehlers-Danlos syndrome (EDS). My rare disease journey began in 2013, when I started struggling with symptoms including passing out, vertigo, tinnitus, vision disturbances, and more. It took about a year of going back and forth between… Read More

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

Living Stronger: Jessica’s Rare Journey

Written by Julie Ostroff on June 10, 2022
Close up of Jessica smiling.

I am 17 years old and a high school junior with hEDS (hypermobile Ehlers-Danlos syndrome). I should be attending a performing arts high school for musical theatre, but that’s not the case for me anymore.

About a year ago, I was diagnosed with EDS by a geneticist, which has progressed… Read More

Raymond’s Journey to a New Normal

Written by Julie Ostroff on May 27, 2022

Imagine being a healthy 30-year-old waking up one day to find yourself stumbling, fatigued, tripping and unable to walk. Following two trips to the emergency room, you are told to return home, drink plenty of fluids and within a few days the symptoms will subside. Days later, you find yourself… Read More