Cosmopolitan Features Rare Disease Article

May 13, 2013

A new article appeared online at this morning featuring the story of the Global Genes Project’s Managing Editor, Ilana Jacqueline and her journey with two rare diseases.

“These days it’s all about the sodium—eight bottles of Powerade, four bottles of water, and 4,000 more milligrams to go before I’ve met my daily quota. Two bags of IV saline at the doctor this morning and my lips are still chapped, my hands are still dry, and my head still feels like it’s full of cotton candy. That’s just Tuesday.

Tomorrow I’ll be up early and while all the other 20-somethings are at the gym, I’ll be making my way to the local hospital. That’s where I’ll strap on my heart monitor and work the recumbent bike during cardiac rehab, where I’ll be the youngest patient by about 40 years.

Everyone is curious—from the nurses who haven’t read through my chart to the seniors on the elliptical next to me. That’s okay though. Everyone is curious here, and it’s not violating to feel someone’s eyes on your chest—not when you know they’re really just searching for a scar.

They won’t find one on me. I’ve never had open-heart surgery like 99 percent of the patients here. I’ve never had a heart attack either. On the outside I look like a perfectly healthy 23-year-old—right up until I’m on the floor.

And as someone who grew up with two rare diseases—I know there are responses far worse than curiosity.”

Continue the story here.

Primary Immune Deficiency and Dysautonomia – Living With a Rare Disease – Cosmopolitan

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