hello people this is my first blog and will start by introducing myself i am a male who as diffuse cutauenus systemic sclorosis

[vaughan]

Is there anybody in Preston with this same disease? If so get in touch as with help of others need to publicise this disease to help other sufferers in the future.

[Emma2]

I'm not from Preston but I thought I would say hello to you. I have limited systemic sclerosis - CREST. It's good to read all the other comments that people are making - it's makes you realise you are not alone. Are you a long term sufferer or recently diagnosed?

[vaughan in reply to Emma2]

hi i was diagnosed in nov2010 and still cant get my head round this illness i have just started taking mycophenolate which make me feel sick, have you suffered for long with this and how is your mobility i had to give up work an feel like im setting slowly in concrete

[Emma2]

It is a very strange condition and sometimes the more you read about it the more it can scare you - it's a bit like a medical dictionary, if you have one in the house and read it then you have everything. I started suffering with Raynauds quite a few years ago and the onset was very slow - it became much more of a problem and I received medication to help me which gave me awful side effects. At that time I was showing symptoms of an underlying condition - my Raynauds was affecting my hands, feet and tongue and my nailbeds on my hand looked awful (like little blood blisters). I pushed for a blood test and was diagnosed with CREST. I am on medication to help my circulation and to protect my kidneys (which can be vulnerable with the condition I have). I am very lucky that I have a limited form of the disease and that I am not suffering with anything other than the Raynauds at the moment. My mobility is fine and I am told that my exercise routine probably made the onset of the condition quite slow. Are you a member of the RSA and have you been to any of the annual conferences they do? I really recommend doing both if you have not done so - the support from the RSA is brilliant and the conferences give you a chance to get updates from leading researchers in the field about what progress is being made to understand and treat the condition. You will also get the chance to meet people who know exactly what you are going through. You must find it really frustrating - just remember you are not on your own.