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Living with NMO: Candace Coffee

Candace Coffee:

I had graduated from my undergrad down at UC Irvine. Very typical… Didn’t know what I wanted to do with myself… Really kind of unsure about who I was, wanted to define myself stuff. I went to Tibet to do some volunteer work for a couple months, and about midway through the first month I just started going blind in my left eye, started going down like a black curtain. And it hurt, too. It hurt a lot to move it. I say about three months later I started going blind in this eye, my right eye. I didn’t ignore it, but I just pushed it aside because I was dancing in a show. I was working, and things had finally sort of come back to being normal. I didn’t really want to lose that. I let it go for about a month, and it went completely blind. I assumed it might come back because when people have optic neuritis with MS it tends to come back on its own, but it didn’t.

Candace Coffee:

So, after a month of that eye being blind, I started to lose the left eye again, and then things progressed pretty rapidly at that point. I started losing the sensation in my feet, and it sort of worked from the toes up to, probably right about here in terms of paralysis and numbness. I could still walk, but I would say I was shuffling. Half of my body was freezing cold, and half of it was burning hot. Overall it just kind of felt like someone was ripping off my skin because all my nerves were exposed and feeling that. I was totally blind at that point. So, we knew it wasn’t obviously an eye thing, and a neurologist told me that she thought I had Devic’s disease, neuromyelitis optica.

Candace Coffee:

I mean, I have a strong structure and a strong body, and I’m an athlete. But I’m very fragile to all these outside influences, and I just think that’s the way it is. But I only have when eye left, and I’m an athlete and a dancer and a martial artist. That to me is everything. I mean, that’s how I keep my sanity, and as far as I’m willing to explore at this point with the information that’s out there would be something with embryonic stem cells. It’s the only sort of therapy out there that sparked my interest as thinking, “Hey, you know that actually might work. Or it might at least stop something in its tracks.”

Candace Coffee:

I would love someone to figure out how to bring back the optic nerve. That would mean everything. But that’s the hardest nerve to fix. They’re not there yet. I’m not ready to give up my independence yet. It means so much to me, and I fight to keep it. That causes a lot of grief sometimes, too, because I know my parents… I’m like a China doll to them. They still want me to have my life. They want to see me as a young adult get to do the things I love. So, we kind of go back and forth on that, and I’m stubborn. They know that I’m so stubborn, and at this point I’m not willing or ready to give up.

 

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VEROK26 says:

I have a questioin. What was the reason of Candace`s Death? Its a shame ­čÖü

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