Joy Johnson is no stranger when it comes to primary immunodeficiencies (PI). Joy was first diagnosed with Common Variable Immunodeficiency (CVID) five years ago and was overwhelmed trying to figure out how she would cope with the disease for the rest of her life. In addition to her diagnosis, Joy’s nine-year-old daughter was diagnosed with a mild form of PI called Hypogammaglobulinemia, and her father is currently going through his diagnostic process after discovering he has severe Hypogammaglobulinemia.
Even though the struggle of facing multiple diagnoses amongst the family, Joy shares, “The education and support I have received from IDF during the nearly five years since I was diagnosed has helped me immeasurably. Every bit of learning I have done to navigate my way through diagnostic testing, treatment with immunoglobulin infusions, dealing with infusion side effects, and figuring out how to cope with this disease for the rest of my life is all because of IDF.”
Today, Joy is an active member of the IDF community and utilizes IDF’s support and education to navigate her family’s journey with PI. After being isolated for over a year due to COVID-19, Joy wanted to celebrate her birthday with family and friends. She thought, 'why not support a cause that is near and dear to me and have a virtual celebration with my loved ones?'
This thought inspired her to create a Facebook Fundraiser to raise funds for IDF. Through the Facebook Fundraiser, she was able to raise $200 for IDF. On top of this, she utilized her fundraiser to promote the importance of plasma and bring attention to the lack of plasma donors that could impact her ability to obtain her immunoglobulin treatment. She proceeded to encourage those who may not be able to give monetarily to donate plasma.
We are so thankful for community members like Joy, who raise funds and awareness for the PI community. It is so important now than ever before to educate others about PI, and you can do so by creating your own Facebook Fundraiser. April is National PI Awareness Month. We encourage you to raise funds in honor of this global celebration. Start your Facebook Fundraiser here.