Published April 29, 2023 by NORD
By Kylee S. This story is about me and my long journey to a diagnosis. Although I might have had mild symptoms as a child, it was nothing noticeable. My …
Continue reading “Undiagnosed: When Your “Depression” Isn’t Depression”
Read morePublished April 29, 2023 by NORD
By Rachel O. I was born rare, but my zebra journey did not begin until just five years ago at the age of 32. Throughout those 32 years, I faced signs …
Continue reading “Undiagnosed: When Your Rare Diagnosis Comes 30 Years Late”
Read morePublished February 28, 2023 by NORD
I’m a patient who has had an interesting history stemming from a neonatal stroke. I was born with a neonatal stroke that caused concerns for microcephaly, I was growth restricted, …
Continue reading “Sparking Conversation: Nick’s Story in Honor of Rare Disease Day”
Read morePublished February 28, 2023 by NORD
I’m the mama of two ladies who have autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS). We noticed symptoms at 5 years old with the first one. We went through extensive …
Continue reading “Banding Together as Zebras: Merry’s Story in Honor of Rare Disease Day”
Read morePublished February 27, 2023 by NORD
I was officially diagnosed with Stiff-person syndrome in 2017, but the onset of my disease was when I was 20. I was in college at the time and had to …
Read morePublished February 22, 2023 by NORD
My life was turned upside down when my daughter, Meredith, was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD) in 2003. My son, Jonathan, was subsequently diagnosed with FSHD in 2013. Since …
Read morePublished February 14, 2023 by NORD
My brother, Barry, was born when I was two years old with what we called, at the time, an “unspecified neurological condition.” He faced a host of medical issues, the …
Continue reading “Fighting for Barry: Alexis’s Story in Honor of Rare Disease Day”
Read morePublished February 7, 2023 by NORD
In 2005, I was in a serious motor vehicle accident and sustained a traumatic brain injury (TBI). Before this, I was in the third year of my PhD studies in …
Continue reading “Rare Resilience: Tracey’s Story in Honor of Rare Disease Day”
Read morePublished January 28, 2023 by NORD
I am a caregiver to my 2 ½ year old son who has hypophosphatasia (HPP). He was diagnosed right before he turned 6 months. My son showed signs that he …
Continue reading “The Many Hats of a Caregiver: Elizabeth’s Story for Rare Disease Day”
Read morePublished January 18, 2023 by NORD
My rare disease is called sporadic visceral neuropathy. There are only four known recorded cases worldwide and very little research on the disease. My diagnosis is relatively new — late …
Continue reading “Kiera’s Rare Disease Journey”
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