Published February 23, 2021 by NORD
I am a patient diagnosed with autoimmune neutropenia and AA amyloidosis (renal) which affects my kidneys. My symptoms include fatigue, shortness of breath, low white blood cells, anemia and stress. I have also been suspected of Behcet’s disease, but doctors have not confirmed this diagnosis. I …
Continue reading “Ramona’s Story in Honor of Rare Disease Day”
Read morePublished February 23, 2021 by NORD
I was diagnosed with stiff person syndrome (SPS) on a Monday night in October of 2017. The impact of my condition on my life has been tremendous. My symptoms started after I lost my former husband to …
Continue reading “Tara Z’s Story in Honor of Rare Disease Day”
Read morePublished February 22, 2021 by NORD
I faced lot of challenges both socially and academically throughout my life. However, with a lot of love from my mother and godly mentors, I was able to overcome many …
Continue reading “Hudson’s Story in Honor of Rare Disease Day”
Read morePublished February 22, 2021 by NORD
Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. …
Read morePublished February 12, 2021 by NORD
I am a patient who has lived with systemic scleroderma for over nineteen years, having been diagnosed as a teenager. Rare Disease Day is a day when I get to feel like I am making a difference …
Continue reading “Amy’s Story in Honor of Rare Disease Day”
Read morePublished February 12, 2021 by NORD
I was diagnosed with primary immunodeficiency (PI) when I was four years old. The adversities I have faced with rare disease started even before I received a life-saving diagnosis and are still something I struggle with …
Continue reading “Ashlee’s Story in Honor of Rare Disease Day”
Read morePublished January 26, 2021 by NORD
My son Bradley was diagnosed with infantile myofibromatosis when he was four months old. We noticed he had a large mass on his forearm and immediately called the pediatrician. They sent us …
Continue reading “Bradley’s Story in Honor of Rare Disease Day”
Read morePublished January 25, 2021 by NORD
My oldest daughter, Olivia, was recently diagnosed with Barakat syndrome (Gata 3 or HDR syndrome). Though she is eleven now, we have been battling the kidney disease part since birth and hearing loss since age five. As of now, she does …
Continue reading “Olivia’s Story in Honor of Rare Disease Day”
Read morePublished January 24, 2021 by NORD
You are featured in the 2021 Rare Disease Day international campaign as a patient “hero” from the United States. Why is Rare Disease Day important to you? I‘m so honored to be a part of …
Continue reading “Tristan’s Story in Honor of Rare Disease Day”
Read morePublished November 13, 2020 by NORD
At the Head of the Herd is… Charlene Son Rigby, President and Cofounder, STXBP1 Foundation Charlene advocates for those affected by… STXBP1 encephalopathy Charlene is located in… San Francisco, CA …
Continue reading “Head of the Herd: Charlene Son Rigby, President and Cofounder, STXBP1 Foundation”
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