Rare Disease Hero: Ellen Barnes (Intercranial Hypertension)

In honor of the World Orphan Drug Conference (WODC) this week, I wanted to dedicate a post to some other members of the rare community—some of our real Rare Disease Hero’s. As someone with a rare disease who works with a rare disease organization on a daily basis, I see a lot of patients and I hear a lot of stories about their struggles and triumphs. It really helps me put into perspective just how lucky I am to be only as inconvenienced as I am by my disease when others are seriously struggling to get through the day.

And while I could literally sit here and write a roll call of all of the people who are rare disease hero’s (starting with my mom, continuing with Nicole Boice—the head of Global Genes, and Carrie Ostrea of Global Genes & Little Miss Hannah, Chris and Hugh Hempel who researched, FDA approved and then treated their twin daughters, to Dr. Santa Maria who is taking on the dysautonomia research…) I’m going to specifically talk about one person who is having a particularly tough week (or month…) and could use a few comments about their complete bad-assery.

Ellen Barnes


My mom found Ellen (and I’m not sure where because she has now covered the entire internet with advocacy efforts) but anyways, she found her on Facebook. And for a while she just kept saying to me, “you will never believe what this girl is going through—and she’s so positive!” Then she asked Ellen to email me about writing for Global Genes and I had the chance to really check her out.  Ellen has Intercranial Hypertension and this week she not only had major brain surgery—but she was told she’ll need another brain surgery again shortly.

Ellen, commonly known as “Effervescent Ellen” for her bubbly personality was diagnosed a couple of years ago with a pseudotumor cerebri (now called Intercranial Hypertension) when she was 16. Only 1 in 100,000 people are diagnosed with this. IH is where your body produces too much spinal fluid and it “crushes” the brain instead of “cushioning” it, like it’s supposed to. It causes a lot of neurological problems including—most obviously a 24/7 headache.

Ellen has said, “Though having this condition is life altering & frustrating, it’s brought me so many blessings. I’ve met some wonderful people who will forever be in my heart and are like family. I do my best to meet other families when they are traveling to Ohio for treatment of IH. I’ve met quite a few families so far and have gone to sit with them during surgeries and doctor’s appointments. I’ve become patient and learned to live day by day through this rare disease. I’ve learned through all the pain that I endure that I am stronger than I ever thought I could be. I want to be a pediatric oncology nurse eventually and I know going through all this stuff as a kid will make me be a much better nurse. The main thing that gets me through every day is to “Choose Joy!” Our circumstances aren’t always able to be changed, but the attitude that we face it with always can be made better.”

You can follow Ellen’s journey on her Facebook page here.

Ellen is an inspiration to me because even when she’s going through some of the hardest, most painful periods of her life—she’s able to keep the thought, even if it’s in the way back of her mind, that the heart of life is good—and there is always—even when someone is literally stitching up your head—something to be grateful for.

(LMAO: I also love that when I messaged her with a question about this post she was like “sorry I haven’t turned my drafts in for the blog, I just got home but it’s at the top of my list” and I had to be like, “Ellen, you just had brain surgery. I wasn’t actually expecting you to have brain surgery and your drafts in at the same time. Go watch Real Housewives.”)

Feel free to leave love, prayers, hugs, or proclamations of awesomeness in the comments for Ellen!



12 thoughts on “Rare Disease Hero: Ellen Barnes (Intercranial Hypertension)

  1. […] redesign, I also heard some not so great news about a friend. I’ve written a few times about Ellen who has IH and has been through hell (like…HELL) and back this past year and just can’t seem to […]

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