Author | Speaker | Advocate

The Diagnosis

Ilana was 19-years-old when she was diagnosed with hypogammaglobulinanemia, a Primary Immune Deficiency Disease. This rare condition means the patient lives with an immune system in which not enough gamma globulins are produced in the blood (thus hypo- + gamma + globulin + -emia). This results in a lower antibody count, which impairs the immune system, increasing risk of infection.

Although the diagnosis came later in life, the disease was something Ilana dealt with from infancy without a name, treatment, or support from knowledgable physicians. Being rare and undiagnosed caused much turmoil and she struggled to manage an unknown dysfunction while managing school, work and a social life. For Ilana, this caused a lifetime of serious infections, countless hospitalizations and surgeries. Her disease is now treated with weekly plasma infusions of immunoglobulins to replace the ones her body doesn’t make naturally. She takes precautions to reduce risk of infection including limiting travel and crowds. This is why her advocacy has focused so intently on awareness, community support, and quality of life initiatives.

She’s shared her story on social media, through outlets like Cosmopolitan Magazine and through influencer campaigns.

 

For several years she worked as a columnist for IG Living Magazine, advising other patients on life with immune deficiencies in your twenties.

 

It’s not just articles that Ilana offers in terms of advocacy for the Primary Immune community, she’s also taken to new media like TikTok to share her experiences with infusions and treatments.