Published June 17, 2023 by NORD
By Justin H. My name is Justin, and I am a father of three, including my youngest son Garrett. Garrett entered the world appearing healthy like his older brother and …
Read morePublished June 16, 2023 by NORD
By Rebekah P. (she/they) It was because of a rare cancer that I came into understanding my gender and sexuality. Of course, I wasn’t cognizant of this and didn’t put …
Continue reading “When Chemo Leads to Gender Euphoria: My Journey to Queer Joy”
Read morePublished June 14, 2023 by NORD
By Quintissa P. My name is Quintissa and I was born with sickle cell anemia. As a result of this condition, my hematologist has estimated that I’ve received well over …
Continue reading “Quintissa’s Rare Disease Story in Honor of World Blood Donor Day”
Read morePublished May 26, 2023 by NORD
By Lena Z. I was born with two rare diseases: medullary sponge kidneys (MSK), a birth defect where changes occur in the tiny tubes inside a fetus’ kidneys, and hypermobile Ehlers-Danlos …
Continue reading “The Healing Power of Movement: Lena’s Rare Disease Story”
Read morePublished April 29, 2023 by NORD
By Jessica F. This story is about Sophie, my now 10-year-old daughter who is impacted by limb girdle muscular dystrophy type 2A/R1, previously misdiagnosed and treated for necrotizing myositis. Sophie’s …
Continue reading “Undiagnosed: When Your Child Is Misdiagnosed”
Read morePublished 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 …
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