What do they call the collector of rare diseases?

So what do they call the collector of rare diseases? I just ask because it looks like I may have become one. OK so officially I have been diagnosed with two Postural Orthostatic Tachycardia – 21st Jan 2011, Hidradenitis Suppurativa 14th March 2011. I am still waiting for the EDS diagnosis and the neurologists to admit I have occular myasthenia gravis. I know hell may freeze over first but I can wait.

I have had the condition Hidradenitis Suppurativa or HS for years and I have been very lucky as the disease has always stayed in stage one. Its a disease that people wont talk about due to the shame associated with it. So I am going to talk about it as its painful and has nothing what so ever to do with the sufferers personal hygiene and its not contagious.

HS is a chronic and debilitating skin disease that without treatment will only get worse. The disease is treatable not curable. Its classed as an orphan disease as so little research is being done on it anywhere in the world. Its estimated 1% of the worlds population have it, however it is believed to be massively under diagnosed due to the shame people feel.

HS causes abscesses in the groin, between the buttocks, under the breasts and in the armpits. Basically anywhere the skin folds and where there are certain sweat glands. At its very worst people can be dealing with operations and skin grafts to get rid of the multiple abscesses. For me it means one or two abscesses on the go at anyone time with lots of scarring from previous abscesses. I get it everywhere except my armpits.

I know the shame as its a condition I have never discussed outside my family. No one wants to tell their friends that they are in agony with an abscess that has suddenly appeared on their labia.(yep they pop up in the most inconvenient of places) The pain can be so bad that you can barely walk. The only relief you get is when it finally pops, but then you have to deal with the smell of the discharge from the abscess and the awful realisation that the bloody thing will probably be back in a month or so. When the abscess does pop it leaves behind a hole which doesn’t heal, so not only are you left with purple angry scarring but holes as well that get infected. Plus the abscesses can drain for ages before they eventually start to heal.

I will never be able to go swimming again due to the mess it has left on my thighs in the last year. I was due for a smear last year but have been too ashamed to go due to the state of the “area”. If I don’t want to see it why should I put a practice nurse through it? People say to me that the nurses have seen it all before I want to scream Really?  Because I actually don’t care as its my bits we are talking about!!!

I spent ten years being fobbed off with antibiotics and being told I was just unlucky to get these abscesses. I was tested for diabetes. Just over a week ago I went to see my new Dr – Dr J and he took a swab of the discharge. I rang him yesterday to tell him the antibiotics he had prescribed had done nothing. He told me he believed I had HS due to the fact the swab was basically sterile – a normal one from a normal non HS abscess would be filled with bacteria that would rapidly multiply on a petrie dish in the lab. HS abscesses are almost sterile – although they are prone to secondary infection due to the fact that they stay open and leak for ages before healing. (I know I am currently dealing with one like this).

I couldn’t believe that I had a name for what I had been suffering with ! Plus from what I have found out its worse with stress – that’s true as this flare has ramped up since hubs accident.

So changing Dr’s has been very good for me already. I just need to find out what they call a collector of rare diseases……………………………….

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