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I was diagnosed with Scleroderma, Oct 2011, age 26.

I went to the doctors with very small symptoms: a patch of hair about the size of the palm of your hand missing from the back of my head and some other small, what I thought were incidental and insignificant superficial, facial symptoms.

After being passed from pillar to post for a while, I was diagnosed with Scleroderma.

Scleroderma is a very rare disease therefore bringing lots of uncertainty. It's also incurable but treatable with long treatments of a form of Chemotherapy. 

Like any life changing disease I had so many questions and felt so terribly insecure.

Usually you can be reassured by the specialist that 'this is the way things will develop' or 'this is how we will treat it' and 'this is how you will feel'. However, with Scleroderma, there is so little research around it, I had none of that reassurance, just a 'we'll have to see how it goes'.

 

Scleroderma is a condition where your body destroys its own connective tissue. This being fat, cartilage and all that stuff that holds your organs together. This impacts in the most grizzly and horrid ways on your body.

There are 2 types of Scleroderma; Localised and Systemic. Thankfully I have the localised. With the systemic, there is no cure and you usually die within 10 years of diagnosis, as by the time it has got to a stage of diagnosis, it's too late.

However, there is little research around the localised scleroderma morphing into systemic: what triggers it and how it can be stopped.

 

I am now almost a year into my Chemotherapy and hopefully my symptoms won't spread any further. But I will have to have corrective surgery in the next 2 years, which won't be very nice to say the least. My Chemotherapy is set to last another 2 years at a minimum.

Although I displayed symptoms some 10 - 15 years ago, it wasn't until last year that it was diagnosed and once it is diagnosed, it can then take up to another year for the brakes to be pulled on and stop it spreading.

I am hoping to raise money for research into Scleroderma to aid its early diagnosis, improve the specialists' understanding of how to stop it and most importantly, surrounding its transformation from localised into systemic.

This is a hugely stressful and lonely disease, mainly because of the lack of knowledge around it. I want to stop that.

 

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