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Title: National Kidney Foundation Conference
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Alison Banister
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Registered: 04/10/2004
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(Date Posted:04/11/2006 17:58:51)

Dear All,I recently had a presentation on 'Living with kidney pain', caused by Nephroptosis presented at the afore-mentioned annual conference. It was very well recieved & one of the 2 most popular presentations of the weekend!I wondered if any of you would like to do a presentation on LPHS for next year? If so I can put you in touch with the relevant person. There were 3 nephrologists present in the crowd of approx 400 so it's a good way to make it more well known. I couldn't go in person due to the pain but one of the committee members presented it for me. It was just a 10 minute slot & they could easily have just scrappe it when i couldn't go, but they didn't. The NKF website talks about LPHS sufferers as having mild pain - I think they need some articles from more people who suffer severe pain. I wrote my article for the website when I thought I had LPHS but it turned out to be Nephroptosis. A personal story of LPHS is much needed on their website (www.kidney.org.uk)Best wishes fromAlison

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Alison

koorahk
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Score:150
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Registered:29/04/2003
Time spent: 10193 hours


(Date Posted:30/11/2006 20:43:26)

Reply to : Alison Banister
Dear All,I recently had a presentation on 'Living with kidney pain', caused by Nephroptosis presented at the afore-mentioned annual conference. It was very well recieved & one of the 2 most popular presentations of the weekend!I wondered if any of you would like to do a presentation on LPHS for next year? If so I can put you in touch with the relevant person. There were 3 nephrologists present in the crowd of approx 400 so it's a good way to make it more well known. I couldn't go in person due to the pain but one of the committee members presented it for me. It was just a 10 minute slot & they could easily have just scrappe it when i couldn't go, but they didn't. The NKF website talks about LPHS sufferers as having mild pain - I think they need some articles from more people who suffer severe pain.&nbs

I would love to do a presentation next year but, unfortunately, the conference is usually held in October, when David and I are away, in Italy. Next year, we will definitely be away, as it will be my 50th birthday on the 15th. However, I am willing to write something that can be read out, so if you can put me in touch with the relevant person we can perhaps sort something out.

I too noticed that the NKF website says LPHS patients have mild pain - who on earth did they talk to??!

I am going to write some articles for our regional newsletter of the KPA - North West Region KPA - and hope this helps too.

Best wishes to all

Helen xxx

 

 

 

 

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Hez

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