Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > Research, drugs, treatment, new diagnosis

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

Reply
 
Thread Tools Display Modes
Old 09-12-09, 05:25 PM   #1
waz1980
Approved Member
 
Join Date: Oct 2009
Location: Crawley
Posts: 121
Default Am I naive or is there hope?

Hi

As some of you know, my mum has recently been diagnosed with HD and I, along with 3 sister are at risk.
I have done loads of research on HD and read other peoples and reguarly look on several sites including the lighthouse one. Is there now, more than ever, hope for the future with regards to successful treatments for HD?
So many trials going on and many starting next year for treatments/cures for HD.
It just seems that people still believe that the fate of someone with HD is inevitable and I get upset by that idea.

I am new to this and maybe a little naive, but I think things are changing and the future of someone with or at risk of HD might not be what it was 20 years ago.

Thanks

Wayne
waz1980 is offline   Reply With Quote
Old 09-12-09, 06:46 PM   #2
just1moreperson
Approved Member
 
Join Date: Sep 2007
Location: England
Posts: 3,390
Send a message via Yahoo to just1moreperson
Default Re: Am I naive or is there hope?

Quote:
Originally Posted by waz1980 View Post
Is there now, more than ever, hope for the future with regards to successful treatments for HD?
Yes.

Will you be "cured" today? No.

There's plenty of years left before we can cure HD but there's a lot of research being done and all of it offers a lot of hope for us. They really are getting somewhere now and the research into stem cells has certainly opened up a huge amount of options for the researchers.

But they're still talking about "if we can do this" "if we can do that", we're not at the stage where we can say "we can do this". So it will take time to get there, but we're heading very much in the right direction.

Plus with the backing of CHDI we have enough money to fund HD research projects all over the world so we have a good solid set up. What we need is plenty of people prepared to join trials so we can get results of these trials quickly, which would cut some time off any potential treatments.

Tc, Matt.
just1moreperson is offline   Reply With Quote
Old 09-12-09, 08:30 PM   #3
telibeli
Approved Member
 
Join Date: Jun 2009
Location: Lincs
Posts: 483
Default Re: Am I naive or is there hope?

Absolutely there is hope. It still may be a long way off but the foundations are definitely there. Not so long ago there was no definite diagnosis for this disease. Today we have a handful of drugs that may help alleviate some of the symptoms. There is a growing awareness and understanding. We are certainly living in the best times so far. And the research continues and appears to be gathering momentum. I don't feel it's a wasted effort to hope that our children will benefit from the practices today.
__________________
Don't wait for the storm clouds to pass, learn to dance in the rain.
telibeli is offline   Reply With Quote
Old 09-12-09, 09:05 PM   #4
DH
Approved Member
 
Join Date: Dec 2007
Posts: 2,184
Default Re: Am I naive or is there hope?

Quote:
Originally Posted by waz1980 View Post
Is there now, more than ever, hope for the future with regards to successful treatments for HD?
Yes. People like me are of the lucky generation that won't develop symptoms because medical science will come up with suitable treatments in the near future.
__________________
Fetchez la vache.
DH is offline   Reply With Quote
Old 10-12-09, 08:26 AM   #5
colettew
Approved Member
 
Join Date: Feb 2009
Location: Marlow, Bucks
Posts: 334
Default Re: Am I naive or is there hope?

That is exactly the same question I asked the first time I met with our Neurologist. She answered that I wasnt naive and that there is enourmous amounts of hope. Obviously there are no guarantees that treatments will work but there are so many in the pipeline that some of them have to.
Hang in there
colettew is offline   Reply With Quote
Old 10-12-09, 02:13 PM   #6
dublinmum
Approved Member
 
dublinmum's Avatar
 
Join Date: Nov 2009
Location: Dublin
Posts: 196
Default Re: Am I naive or is there hope?

Is there hope?

Of course there is & I'm all for hope but I'm also realistic.

There is a lot of research ongoing but research takes years & after that come trials & whilst I "hope" (dare I even say believe ) that a cure will be found for my kids generation, I don't believe it will be in time for people like my husband who are already asymptomatic.

It's a very fine line between being optimistic & being dillusional

Having said that I do believe that if hope promotes a positive frame of mind then it can't be a bad thing
dublinmum is offline   Reply With Quote
Old 10-12-09, 02:49 PM   #7
just1moreperson
Approved Member
 
Join Date: Sep 2007
Location: England
Posts: 3,390
Send a message via Yahoo to just1moreperson
Default Re: Am I naive or is there hope?

We can help ourselves though by joining research projects, the easier it is to get people for trials, the quicker the trials will be done and results seen. If they have to spend months searching for people to select for trials then things will take longer.
just1moreperson is offline   Reply With Quote
Old 16-12-09, 10:09 AM   #8
Dolphin
Approved Member
 
Join Date: May 2008
Location: Surbiton
Posts: 651
Default Re: Am I naive or is there hope?

Dear Wayne

HD is so much more "curable" than any other disease with a genetic basis that doctors are currently studying. Finding a cure may unlock the door for many other diseases that have a much more complicated basis. That's why it is worth holding onto a great deal of hope. There's a huge amount of interest from most of the medical world. If they knew what the normal protein did for sure, I'd have a stronger hope about the time frame we're looking at.

I don't hope for me because by the time I have symptoms there will be so much cell damage to repair, but if they can find something in the time frame that my children will need it (may need it because there still is a 50/50 chance for both of them) then that would make me very happy. I've taken part in some research projects and it has been very interesting and helped put in context some of the stuff I've read. But you can spend all day reading up on the disease and find you've put your own life on hold.

Of course, it would be nice to hope for me but I think it is more helpful to try to accept it and get on with trying to stay symptom free for as long as possible. Be active, eat well, try not to get too stressed etc - do all the things that promote a healthy life in general. LIVE now.

Dolphin
Dolphin is offline   Reply With Quote
Old 16-12-09, 04:28 PM   #9
just1moreperson
Approved Member
 
Join Date: Sep 2007
Location: England
Posts: 3,390
Send a message via Yahoo to just1moreperson
Default Re: Am I naive or is there hope?

Good advice right there.
just1moreperson is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 02:08 PM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA