About Ilana

Hi! I’m Ilana Jacqueline. I’m a rare disease patient, advocate, author, and influencer.

After 19 years of confusing symptoms, medical gaslighting, and striving towards answers I was finally diagnosed with Primary Immune Deficiency Disease in 2009.

I also live with abdominal adhesions, dysautonomia and gastroparesis as part of my condition. After writing a blog about my adventures as a 20-something with a chronic illness, I was offered a book deal in 2018 and published the best-selling self-help book, Surviving and Thriving with an Invisible Chronic Illness.

My work in digital health focuses on pulling real patients into the design of healthcare. I work with major pharmaceutical companies, healthcare brands, TV and documentarians, and across social media to bring awareness, education, and inclusion to the way we treat patients with complex illness. 

My Diagnosis Story

You can find my book Surviving and Thriving with an Invisible Chronic Illness in bookstores across the US, UK, and Canada as well as on Amazon and Audible? (Strapped for cash but still need help? My book is available to ALL in need through your local library!)

Purchase my Book

Think you’ve seen me around before? You probably have! I’ve been featured in articles on AOL and Cosmopolitan. I’ve made several appearances on the long-running Lifetime TV show, Behind the Mystery: Rare and Genetic (created and developed by my mother and TV producer Carri Levy and co-creator, producer Molly Mager.)

I appeared in the award-winning documentary, Behind the Visible about life with POTS and shared my story through podcasts like Uninvisible and The Major Pain Podcast.

Press and Praise

Are you a brand looking to reach the chronically ill community? I’d love to work on your next social media campaign.

Learn More About Working With Me

Do you just need a little advice as a patient or a caregiver struggling to stay afloat? I am never unreachable. Shoot me a DM on Instagram and I’ll do my best to connect you with the right resources.

Follow me on Instagram –>