aHUS Conference Newcastle 2011

Well im finally back from the long awaited conference on aHUS and it was really interesting and even come back with some positive news.

The drug Ecluziumab i have spokedn about before was mentioned in detail but rather than try and explain it all it basically comes down to the following.

aHUS is classed as a rare disease and therefore they have applied for funding where one rare diseases group gets it per year. 30 groups applied for the funding and HUS has been shortlisted to the final 7.   IF and its a big IF aHUS is succesful then there will be the money in place for all the patients in the country no matter where you live who were currently not on the transplant list to be able to go on it with this drug (other factors as well are taken into account of course) which currently stands at 62.

Now the drug also has to be approved for use in patients with aHUS, it has been trialed for the last 2 years with great success and as you may see in the media at the moment the sufferers in germany with ecoli related aHUS are on it as well.

So if all this goes well and i stay well enough by April next year i maybe able to go back on the transplant list. I am so excited about the breakthrough of this drug and just goes to show you should never give up.

In the mean time i need to become part of an aHUS community to show MP's and parliment personal experiences of what we go though and how this would change our lives. There maybe some hard work involved but it will be worth it.

So glad i could share this great news with you all.

Also got to meet the fantastic Proffessor Goodship who is classed as the expert in this field, such a lovely man and he remembered who i was and also confirmed he was still looking at my blood to see if they can find what gentic defect i have.

I also had the pleasure of speaking to a lovely family from scotland who unfortunatley lost their daughter to this terrible disease but they seemed so positive for the future despite what they went through. The courage of some people amazes me and i was so honoured to of met them.

TTFN

XX

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