Blog
Patients Needed for International Childhood Takayasu Study
- Childhood, Rare Disease, Research Study
- Takayasu Arteritis
Patients Needed for International Childhood Takayasu Study My name is Katrina Bargender, and I was diagnosed with Takayasu arteritis when I was 14 years old. My first symptom was vision loss in my left eye, which unfortunately was never restored. I was admitted to my local children’s hospital with severe anemia, high blood pressure, elevated […]
His Grandmother’s Kidney Donation Helped Save Nathan’s Life
- National Autoimmune Disease Awareness Month, National Kidney Month, Story, Teenager
- Microscopic Polyangiitis
His Grandmother’s Kidney Donation Helped Save His Life Nathan Rose, 17, plans to spend his spring break with his grandmother in Arkansas. The high schooler and his grandmother have always been close, but their bond became even tighter nearly six months ago when she made it possible for him to get a new kidney. She […]
Allison Long Keeps Moving Toward Her Goals: A Marathon and a Medical Career
- Autoimmune Disease Awareness Month, Kidney Awareness Month, Story
- IgA Vasculitis
Allison Long Keeps Moving Toward Her Goals: A Marathon and a Medical Career Allison Long had never run a marathon, but it was a goal. She was training for a half marathon after completing a 10k when she was diagnosed with IgA vasculitis/IgA nephropathy at 21. In the face of a chronic illness, Allison, now […]
Dr. Catherine Sims Leads Team Researching Pregnancy and Vasculitis
- Pregnancy, Research, Vasculitis
- Pregnancy, Uncategorized
Dr. Catherine Sims Leads Team Researching Pregnancy and Vasculitis Pregnancy can be complicated, even for healthy women. But for someone with a rare autoimmune disease, even thinking about having a baby can be overwhelming and isolating. Vasculitis patients don’t have a large network of people to ask questions about what it means to be pregnant […]
Sharan Knoell Champions the Doctor Who Diagnosed Her
- GPA, Lung Biopsy, Story
- Granulomatosis with Polyangiitis
Sharan Knoell Champions Doctor Who Diagnosed Her Sharan Knoell is one of those rare vasculitis patients who got a diagnosis quickly. She has two people to thank for that. Sharan had always been very healthy and then shortly before her 35th birthday she started feeling ill. She thought she had the flu but she kept […]
Rare Disease Day is All About Sharing Information
- Rare Disease Day, Wear your stripes
- Uncategorized
Rare Disease Day is All About Sharing Information Get ready to show your support for everyone who has been diagnosed with a rare disease. Rare Disease Day is February 28 and we want to make sure people living with rare diseases are visible. So don’t forget to show your stripes! Medical professionals are taught when […]
