We’re pleased to share our next patient spotlight interview with Helen, who was diagnosed with CVID in late 2022 at the age of 52. Since then, she’s shared her triumphs and struggles with the PI community on social media to raise awareness and express gratitude for plasma donors everywhere. We hope you enjoy reading her story!
How and when were you diagnosed?
I was diagnosed at the end of 2022 at the age of 52. My diagnosis came out of nowhere, as a result of a CT scan which showed an enlarged spleen and subsequently led to blood tests revealing the immunodeficiency.
How has treatment impacted your life?
The treatment appears to have reduced the infections I was suffering from and their severity. However, I find it and its side effects very intrusive, and I struggle to deal with this.
How did you decide this was the correct treatment for you?
I decided that weekly sub cut (SCIG) would be easier to fit in with my life than three weekly hospital visits for IV treatment (IVIG).
Why did you decide to start your Instagram page and share your story?
I decided to share details of my condition to raise awareness that its rarity means people generally have no knowledge of the impact of it or the treatment it requires. I also want to express my gratitude to the plasma donors who make it possible for me to have the infusions.