Saturday, 1 March 2014

A long wait - Rare Disease Day 2014

I’m a day late, but this week has been rather momentous for me: three days ago I finally received a diagnosis that explains all of my symptoms.

It’s been seventeen years since I first starting having nerve problems.

I'm not going to go into specifics right now, but it doesn't really matter what the disease is as so many people with rare illnesses face the same problems.

That long wait is typical of having a rare disease, and in many ways I’m lucky. There are those who have waited fifty years to get a diagnosis, and during those long years they are constantly told they are imagining all their symptoms, that nothing is really wrong, to basically shut up and put up. I have been told all of the above, but I’ve also got family who believe me fighting in my corner, and a couple of great specialists who also believe me and want answers nearly as much as I do.

Why the long wait? Well, there is only one specialist in my condition in Scotland, and only a couple more in the UK. There's a two year wait to see that specialist, who as it turns out has had to close the waiting list because he is retiring in less than two years from now. It's not going to get any better: the hospital management refuse to let someone take over the clinic even though it is so oversubscribed, and it will be closing when the specialist retires.

It's not just the wait to see the right specialist: it’s being bounced from doctor to doctor because I'm not an easy case, the lack of joined up services that don't look at the whole picture, that essentially wash their hands of you as soon as you don't fit in their special little box. And then there is the lack of information, instead you have to go hunting for every little scrap there is (not a lot because it's only in the last five or so years that studies have actually been conducted), often so that you are more knowledgeable than a lot of the doctors attempting to treat you. It's all those little things that leave you feeling less than worthless, alone and like you are never going to get proper answers or treated with respect.

Before it sounds like I'm ragging on the NHS, (okay I am a little but no big organisation is perfect), I would like to say that I would not have got so far without it, and there are a great many people inside (and outside) the NHS that are working to change the information out there and to join up and improve services. It's just as it's a rare disease, it's not 'cool' enough to warrant a lot of notice or research.

Hopefully that awareness will change, and a generation from now, people won't have to wait as nearly as long. In the meantime, I'm going to join the fantastic charity that has provided me with so much information and made me feel a lot less alone - HMSA.

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