Recent Posts

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The Calypso Bar / Re: Merry Christmas & Happy New Year
« Last post by tweetypie on December 27, 2011, 09:52:04 AM »
Wishing every one a Very Healthy and Happy 2012 xxx :)
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The Calypso Bar / Re: Merry Christmas & Happy New Year
« Last post by Matt on December 24, 2011, 11:02:40 PM »
Once again, Merry Christmas (or Happy Holidays if you prefer  ;)) and Happy New Year. :)
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Discussion / Re: Thalidomide for HHT
« Last post by Jase on December 13, 2011, 11:10:03 PM »
That's great news, I hope the bleeding continues to stay away :)
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Discussion / Re: Thalidomide for HHT
« Last post by stevesmash on December 12, 2011, 04:58:26 PM »
Hi Jase,
I have only read about Thaliomide but It seems to be trialled in the states.
I have been on Tamoxifen for over 6 months now and the nosebleeds are almost gone although I do have one or two bleedy spots appearing. But who knows if they would not have appeared anyway.
I have had no noticable side effects from the drug, even though it contains female hormones. (I can still parallel park and reverse round corners! sorry ladies).

Good Luck
Regards
Steve
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Discussion / Re: Thalidomide for HHT
« Last post by Jase on December 07, 2011, 10:50:16 PM »
Guess nobody has then!

Has anybody been prescribed with Tamoxifen and if so has it worked or not and have you had any side effects.

Jase
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Discussion / Re: tamoxifen
« Last post by brian gillard on December 02, 2011, 03:50:39 PM »
Hi Steve

Glad thing are still OK , same with me let hope we have crack it. Good luck for the future.


  Regards Brian
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Discussion / So angry
« Last post by tweetypie on November 28, 2011, 05:44:52 PM »
So fed up my poor mother in having yet another transfusion hb 6.7. Fluid build up on the lungs and in the legs. She called Dr Shovlin secretary about getting refered to the Hammersmith clinic as she has never been seen but an expert. But no hospital transport available for that clinic
so if you have no means of getting to the hospital tough luck arrgggggg Im so angry
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Discussion / blood clots
« Last post by rainbowmum on November 27, 2011, 01:08:47 AM »
Hi, its been a while since Ive been looking for more information than I already have in my head :)...HHT is in our family and we have lost loved ones through it..including my father and Grandmother...my main problem atm  is nosebleeds...and now and again from the tongue and lips..Im happy with my care on the NHS at the moment and they treat other members of my family,  but I do feel that the size of the blood clots are so large and they make me sick if Im not quick enough...I can go for a few weeks then grounded for weeks a time with bleeds before I build the confidence up to venture out on my own again...Im concerned that I sometimes feel I need the Youngs Procedure then other times I look at posts and dont !..is it more successful that cauterising?..the way my surgeon talks to me is that he doesnt want to touch me with anything until he has to, going on the history of my family,,,dont know if I should push for the Youngs procedure or not...any comments welcome...Thannx in advance :)
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Discussion / Re: Disability Living Allowance (DLA)
« Last post by rainbowmum on November 27, 2011, 12:47:37 AM »
Hi ~Tracey, sorry its taken me so long...no didnt get the benefit and have put in for it again (only recently)..CAB told me just to bring it to them and it took me a long time (2 years is it? ...the last  hearing was so ridiculous ...was told that because I made my application before I got worse that it couldnt be looked at and would have to go in as a new claim!!!  I  then requested a copy of the notes of the hearing and when I read it, it sounded like someone elses answers...pity we cant get legal representation other than CAB...It has taken me to get worse (
and until now) to go back for the 4th time...will let you know and hope your keeping ok - :)
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Discussion / Re: Fundraising for HHT
« Last post by Matt on November 22, 2011, 08:34:56 PM »
Not a clue I'm afraid, but I would assume that it is something that the HHT Foundation has experience in, so it may be worth contacting them for tips.
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