Blondie73 Posted February 6, 2011 Author Share Posted February 6, 2011 Every little helps,especially if people put it on their facebook pages to! I kind of thought it was travel related as it's for people from all over talking about their experiences about going to India or plans to travel there.Ignorance prevails! Jonathan and I are in touch via email.He has been very moved by the response.The finale cut will hopefully be ready by next month. Link to comment Share on other sites More sharing options...
Hetty Posted February 6, 2011 Share Posted February 6, 2011 I worked with a lady whose family had the gene. I think the terrifying thing is that it is a 50/50 chance of you having it if it runs in your family. I lost touch with her, but often wonder how she fared. The only way is NOT to have children, she didn't, but her sister did, and presumed by the time they were adults a cure would have been found.................sadly not. I have shed tears watching the you tube footage, what wonderful young man, he is a credit to the human race. Link to comment Share on other sites More sharing options...
Blondie73 Posted February 6, 2011 Author Share Posted February 6, 2011 Thanks Hetty. Yes the obvious answer is not to have kids.I know many a HD family through forums. Unfortunately a lot of family members keep it in the dark.Some people don't even know of their risk status until after they have had kids as their parent has just started showing symptoms of it.The 'quirky' auntie was put in a home and explained away as having something else.The stories go on. Link to comment Share on other sites More sharing options...
Blondie73 Posted February 6, 2011 Author Share Posted February 6, 2011 Two more Asia travel forums booted me off.There is no place for a story like this on our forum is what one said! Is it any wonder some of the HD community keep this disease a secret in families when they get treated like this? Link to comment Share on other sites More sharing options...
radar Posted February 6, 2011 Share Posted February 6, 2011 Two more Asia travel forums booted me off.There is no place for a story like this on our forum is what one said! Is it any wonder some of the HD community keep this disease a secret in families when they get treated like this? I think it has too much of a British sounding name, Huntingtons disease as a name may in itself be a reason for them not to have heard of it. It's not like epilepsy or something they may have come across, so prejudice is playing a part I guess. Link to comment Share on other sites More sharing options...
Blondie73 Posted February 6, 2011 Author Share Posted February 6, 2011 Well there loss I guess.Here is another clip: Rock n Roll http://www.youtube.com/watch?v=XQmbo_XJkKo Link to comment Share on other sites More sharing options...
Anna B Posted February 7, 2011 Share Posted February 7, 2011 Huntingtons is an awful disease. Are they any nearer finding a cure or something that can treat the symptoms? What about gene therapy? Surely there must be some research going on? Link to comment Share on other sites More sharing options...
Blondie73 Posted February 7, 2011 Author Share Posted February 7, 2011 Yes there is plenty of research going on.Without going into complicated genetics promising therapies are in the pipe line.However drugs can take many years to come to human trials,even human trials have 3 stages before it is unleashed into the public domain.It will probably sadly come to late for my daughter. Thankyou for taking an interest and asking though!x Link to comment Share on other sites More sharing options...
Anna B Posted February 7, 2011 Share Posted February 7, 2011 Yes there is plenty of research going on.Without going into complicated genetics promising therapies are in the pipe line.However drugs can take many years to come to human trials,even human trials have 3 stages before it is unleashed into the public domain.It will probably sadly come to late for my daughter. Thankyou for taking an interest and asking though!x Thankyou Blondie. I do have a vested interest. I know someone with the disease and it's beginning to get a grip now. They go to the hospital regularly for check ups, but the hospitals never seem to have anything to offer. My very best wishes to you and your daughter. Link to comment Share on other sites More sharing options...
Blondie73 Posted February 7, 2011 Author Share Posted February 7, 2011 It is a very difficult illness to treat.People with JHD/HD can present with many different symptoms aswell as similarities.What may work for one will not for another.Drugs at present are trying only to ease the symptoms,not cure them,unfortunately. Link to comment Share on other sites More sharing options...
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