As part of the recently celebrated National Rare Disease Day, I Skyped with Gabriella (Gabby) O’Donnell, a 16-year-old from the Netherlands who was diagnosed with GPA/Wegener’s over two years ago.
She recently started a blog to talk about her experiences dealing with vasculitis, which you can read here: http://bit.ly/2FQh1up
Hearing her story, I was amazed at Gabby’s bravery and courage since her diagnosis.
Gabby spent Christmas Day 2015 being shuttled from hospital to hospital in the Netherlands after initially contracting flu symptoms that would not go away. While her age is relatively unique among most GPA/Wegener’s patients, her struggles follow the same path of many others with the diagnosis. Rounds of Rituxan, high doses of prednisone, and occasional relapses have been the norm for Gabby, who now attends a high school that specializes in teaching chronically ill students.
While Gabby continues to deal with classic GPA/Wegener’s symptoms daily, complications from the disease forced her to undergo several painful procedures, including plasmapheresis. She also had operations to remove scarring in her airways, which can make it difficult at times for her to talk.
“It’s been hard to control the disease,” Gabby said. “I started the blog because I just felt like writing stuff down would be therapeutic for me, and it has been.” For most teenagers with vasculitis, talking about their symptoms with friends can be difficult and frustrating, especially given that it’s hard for other adolescents to comprehend the true nature of the disease.
Gabby is not the only young vasculitis patient to have these types of feelings. However, few are willing to put all those thoughts in a public forum for others to read. For that, we should all commend Gabby for spreading the word about life with GPA/Wegener’s and through those words, educating others.
