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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 21-10-15, 12:36 PM   #51
Melody
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Default Re: Another Cautionary Tale About Breakthrough Cures

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Originally Posted by shiraz View Post
At the risk of sounding like a stick in the mud....I read an article yesterday just published that says signs of changes in the brain begin decades before any physical symptoms start to show and these cannot be reversed. So, once these trials are completed and drugs licensed in say another 10-20 years how is testing for those at risk going to be tackled? Given all the misdiagnosis that has gone on for years, it means babies will need testing. And not just for those at risk....so many people are unaware that hd is in their family, so many gp's are clueless about hd. Hope is indeed a wonderful thing....but false hopes of anything turning up soon is just depressing.....Sorry if this sounds negative but I guess it's just the realist in me, and the selfish realisation that this ain't gonna help our situation or so many others on here. Patience is a virtue, but time is running out for soo many.
Hi Shiraz,

I totally get where you are coming from, but as I said above, at least they are trying something new and hopefully further drugs and tests will follow. Yes it all takes so long because HD is a fairly slow progressing disease and as you rightly say, the brain is affected years before symptoms show.

Once, hopefully one day, there is effective treatment or preventative medicine, then I would assume all babies would be screened as they are at the moment for several conditions with the Guthrie Test at 5 days old.

It does make me cross with all of the media hype though. Not just for HD but other conditions as well. They have huge headlines, then when you read it is all very early and any potential benefits are years and years away.

Take care. x
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Old 21-10-15, 01:58 PM   #52
Allan
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Default Re: Another Cautionary Tale About Breakthrough Cures

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I see the overall relevance of positive discussion and debate on this particular subject. It’s so good that we can air our thoughts on this thought provoking thread. I hope it will continue to give a good blend of optimism\pessimism from those approaching it from quite different perspectives – seems a bit like 50/50 at present.

The majority of us will be looking at this “development” from our own personal and family perspectives. I respect all views - and no one should apologize for their particular views and comments.

All for One and One for All - we all give a toss.

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Old 21-10-15, 03:58 PM   #53
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Default Re: Another Cautionary Tale About Breakthrough Cures

Ah Mercury...I often say I hope I don't cause offence/sorry but I read somewhere that there is nothing wrong with being offended or causing offence it ain't gonna kill you - from being outraged or offended or disagreeing with someone else's opinions you can then have a nice debate/discussion and embrace a differing viewpoint or change theirs. My sneaky pessimistic/negative comments have drawn forth more views and I totally get where you are coming from. And I long for the day when hd and so many other vicious diseases are easily cured. Where there is a will, there is a way and one day, the sooner the better at that for all those kiddies out there. You are right for sure to be hopeful - it is hope that keeps us striving forth. My views are of course flavoured by the fact that I have had a bit of teary week and am feeling sorry for myself -shame on me, totally. Regards.
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Old 21-10-15, 07:08 PM   #54
banda
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Default Re: Another Cautionary Tale About Breakthrough Cures

It is a good thread...thought provoking and has certainly stopped me and made me think....we do all think about it from a personal point of view but yes there is the future to consider and the very nature of hd and indeed the fact that it can appear with no obvious hereditary link makes a cure essential or at least some ameliorative possibilities.

I think I just want to know when they have cracked it...it is so hard to hear enticing bits of science and trials without anything really concrete...I don't want to be decades away not for us or anyone else.
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Old 21-10-15, 08:25 PM   #55
Gabby
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Default Re: Another Cautionary Tale About Breakthrough Cures

I was at first extremely excited by the news and 5-7 years didn't sound too long I still want hope but I am also cautious to avoid disappointment i need a safety net like when my hubbie was going through testing thinking the worse to lesson the shock ( not that it really worked )
but I really do thank the few willing to be tested and those pushing for the treatments and eventually a cure .. every step is a step closer it will get there eventually .
Whether it will help this generation , next or the one after it has to be done ..
So whether this will be the treatment they envisage or not we will have to wait to see but a little bit of hope is always welcome xxx
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Old 22-10-15, 08:32 AM   #56
Joseharry
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi All,
When Roger was first diagnosed with HD I scanned the internet daily for any HD related info and found almost every week an article saying a breakthrough had been made.
I got so excited each time thinking a cure was around the corner and everything was going to be ok.....2 years later we seem to be no further forward!
However, Although I no longer scan the internet or even read HD Buzz, we "keep the faith"by taking part in research.
I had a lumber puncture where some of my spinal fluid was taken, for use in the ISIS trial and Roger is currently on the Laquinimod trial.
Taking part in these trials really does help us and Rogers mood since starting the trial has vastly improved ( whether this is the drugs or just taking part , we do not know)
So we know there is no quick fix but keep positive by actively participating in research whenever we can.
So although we are realists and know its too late for our generation we have to keep hoping that some good will come of all this for the sake of our kids and the generations to follow.

Brenda x
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Old 05-11-15, 09:54 PM   #57
Allan
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Default Breakthrough Cures ..... Brilliant!

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I know I always seem to be a glass half-empty type of person when it comes to research and the delivery of effective treatment – but this particular case is currently on all the news channels and in all the newspapers:

www.gosh.nhs.uk/news/latest-press-releases/2015-press-release-archive/world-first-use-gene-edited-immune-cells-treat-incurable-leukaemia

It shows how pro-active and wonderfully effective the medical\clinical\research areas really are. Absolutely brilliant – and, of course, we know that our hd-research guys will have picked up on this and could also be “hitting the road running” and thinking outside the htt-box in an effective way. It is still, though, a long and winding road.

Cheers ......

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Old 05-11-15, 11:53 PM   #58
Melody
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Default Re: Breakthrough Cures ..... Brilliant!

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Originally Posted by Allan View Post
.
I know I always seem to be a glass half-empty type of person when it comes to research and the delivery of effective treatment – but this particular case is currently on all the news channels and in all the newspapers:

www.gosh.nhs.uk/news/latest-press-releases/2015-press-release-archive/world-first-use-gene-edited-immune-cells-treat-incurable-leukaemia

It shows how pro-active and wonderfully effective the medical\clinical\research areas really are. Absolutely brilliant – and, of course, we know that our hd-research guys will have picked up on this and could also be “hitting the road running” and thinking outside the htt-box in an effective way. It is still, though, a long and winding road.

Cheers ......

.
Yes great news Allan, especially for the little one treated, but also in many other respects. As you say I'm sure all the researchers will be looking at this and hopefully it will help them too.
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Old 06-11-15, 02:29 AM   #59
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Default Re: Another Cautionary Tale About Breakthrough Cures

I saw this on the north west news tonight and - shame on me - immediately thought whilst watching it I wonder if this might in the future be a way forward regards hd. It is at least something that has proved beneficial in this wee ones case and that is wonderful for her without a doubt. Early days but...where there is a will there is a way....
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Old 09-12-15, 11:12 PM   #60
Allan
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Default Another Cautionary Tale About Breakthrough Cures

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So there I was, today, standing in in the queue at the newsagent’s and I couldn’t fail to spot the headline in the Daily Express:

Alzheimer’s wonder pill could REVERSE devastating effects of the crippling disease

Oh yea, I thought, another one of those fantasy headlines. So, I got home and looked up the actual science:

EPPS rescues hippocampus-dependent cognitive deficits in APP/PS1 mice by disaggregation of amyloid-β oligomers and plaques.
Kim, H. Y. et al. Nat. Commun.6:8997 doi: 10.1038/ncomms9997 (2015).

Then I also found it here:

Magnesium ions show promise in slowing progression of Alzheimer's disease in mice

and here:

Scientists discover chemical that breaks down Alzheimer's plaques in mice

and here:

Chemical clears Alzheimer's protein and restores memory in mice

and here:

Novel Chemical 'Washes Away' Alzheimer's Plaque in Mice

and here:

Chemical Appears to Restore Memory and Clear Alzheimer’s Protein in Mice

Methinks The Daily Express made an obvious typographical error – they omitted to print the word “Mice” in their title! That’s what we also have to be aware of with HD headlines.

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