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Frustrations and Rare Diseases

imagesIt was awful being diagnosed with MS almost 2 years ago. But I got on Google and up popped literally millions of websites, support sites and research about MS. It sucked, it was not easy but it was easy to talk about. Everyone has heard of MS, everyone knows someone with MS or at least bought a ticket in the MS lottery! I sat in the outpatient department where a neurologist told me that it was time to accept that I had MS, ” It was definitely MS” he said.

6 months later I was told it was probably Nuero Myelitis Optica Spectrum Disorder. It’s a one in a million disease. When I googled it, there were about 4 dedicated sites which mostly share information. Not one of these sites originated in Australia. I learnt that the NMO antibody that distinguishes the disease from MS was only identified in 2004. It is a ‘new’ disease and we are all learning together. The problem with a rare disease is not only that it is rare to have it, but also that it is rare that any doctors know about it.

Today, I had a specialist appointment with a neurologist. Unfortunately my normal nuero is on leave so I saw someone else. He stared at me blankly as if to say what is NMO? I don’t blame him. With only a few people in Western Australia with NMO, I’m not surprised he didn’t know a lot about it, or ever treated someone with it. He is a doctor, with years of training, specialising in neurology, but he doesn’t know about my rare disease.

We talked about symptoms, he did a nuero exam, he referred me to urologists and continence nurses to help with my intermittent catheterisations. I was there to talk  about treatments. To decide which immune suppressant or chemotherapy I would decide on. Only, to order these treatments I need to see a neurologist that subspecialises in NMO, my normal neurologist. So, I get to return to the clinic I dread so much in 2 weeks to see my normal nuero. Almost 2 years since this whole thing begun, I am yet to receive any ongoing treatment.

You can imagine the frustrations and the anger at the system. I’m stuck, stuck in a world where my rare disease and the health system don’t see eye to eye. The problem is, almost everyone I have spoken to that has NMO, was originally misdiagnosed with MS. For some of them, MS treatments made their progression worse. Although there is some great research happening in the US, NMO will never get the funding or attention needed to find a cure. As long as it remains a rare disease and an unknown disease, people will continue to be treated incorrectly. While it affects so few, why would more resources be put in place for better research?

I am remaining positive and I’ll continue to fight but after days like today I worry that it’s not enough. Are there any billionaires out there that want to contribute to NMO research?

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3 thoughts on “Frustrations and Rare Diseases

  1. bornetoo says:

    I would love to donate too…Crowd-funding perhaps? Love your honesty Jess, hope things improve with your next appointment. Lots of love XX

    Like

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