As seen by her story on IDF’s website, for Kayla Kuehl, her diagnosis of an extremely rare disease happened over the course of several years.
It’s called Common Variable Immune Deficiency (CVID) and its life expectancy varies although it is common for patients to make it all the way to adulthood. CVID weakens the immune system and affects about 1 in 25,000 to 1 in 50,000 people throughout the world. To learn more, click here.
Kayla first started sensing that something was wrong when she was diagnosed with Idiopathic Thrombocytopenic Purpura (ITP) at twelve years old. Quite the scary sounding issue for a twelve year old girl. She was given Prednisone and then when she turned 14, she experienced a bad case of Autoimmune Hemolytic Anemia.
Growing up, Kayla was no stranger to rare disease and no stranger to hospitalization. In her sophomore year she would get dark bruises on her leg simply from shaving. Once again, the doctors put her under Prednisone but for the first time in her whole life, the drug was powerless. It was that same year that she was finally diagnosed with what she actually had: CVID.
In her piece, Kayla writes:
“The most difficult thing I have experienced with CVID was learning to accept it as a part of my life… It was very hard watching my parents get upset because they didn’t have an at-home remedy like it was the common cold.”
Kayla found a positive outlet on Twitter and on National Primary Immunodeficiency Awareness Month, she was able to share her experiences in public. Her aim was to get a conversation going about this unheard of disease so she took to Twitter with individual tweet facts about her experiences.
Kayla urges that we connect with her via Twitter, especially those like her.
Kayla ends her open letter with some last words of advice:
“Don’t let your disease stop you from your goals.”
Click here to read more from this inspiring young woman and click here to connect with her!
If you had a rare disease, would you be vocal about it? Share your stories, thoughts, and hopes, with the Patient Worthy community!
