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Feb. 29, 2020

TOPIC: Advocacy, Featured News, Patient Stories, Rare Disease Day

Savannah’s Story in honor of Rare Disease Day

Posted by Valaree DonFrancesco

I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack in the summer and now am in the thick of my second one (a relapse), and was officially diagnosed in October with NMO.

NMO has made me half-blind (hopeful for my eyesight to come back) and suffer from nerve pain and body pain, among a lot of other symptoms. I start treatment in two weeks and have to stay on IV infusions every two weeks for the rest of my life. It has changed my ability to work as a teacher.

NMO currently has one FDA approved treatment and others coming out soon. But after every attack or relapse, it worsens the central nervous system. This disease needs more awareness as it is similar to MS but does not have as much exposure, societies, or foundations. Blind “Master Chef” winner Christine Ha (one of Gordon Ramsey’s favorites) actually went blind due to this disease. She’s helped put NMO on the map more.

The chronic illness community is tired of the pressure of “showing up” and it’s time we are heard. Chronic pain affects more than 1.5 billion humans worldwide and people need to hear what it’s truly like to live with it in order to create a more empathetic view. The chronic illness community wants to be heard and not overlooked and the rare disease community needs more awareness. People are suffering and NMO disease among other rare diseases can be fatal and debilitating.

I want others to know that’s it’s OK to put yourself and your health first when you’re suffering. The article I’ve written about my personal story can be read here:  https://savannahwall.wordpress.com/2019/11/01/chronic-pain-im-done-apologizing-for-not-showing-up/