Hello,my name is Paula and my 17 year old daughter has JHD.It's heartbreaking watching my daughter getting worse and not being able to do a thing about it.It's a parents role to protect your child,and I feel helpless.On a cheerier note I hope to find people who understand and we can go on this awful journey together XX

Hi Blondie,

My husband is HD Positive and I have two wonderful at risk children. WHile I do not have a child who has tested postive I certainly can relate to a sense of loss. I surely cannot offer a magic cure for it just friendship and understanding. for myself I get by one day at time! there are lots of folks here who can be a wealth of information and comfort to you and some who will have a better understanding of your battle with JHD. In any case I just wanted to take a moment to welcome you, you've come to a great place!

Hello and welcome. Sorry to hear about your daughter. Im 26 and tested neg a few years back, I have 2 sons and a daughter on the way, I can only imagin how hard it is for ppl in your situation.

again

Louise

Thanks to you both.I have registered with the JHD site but still waiting approval.I've done 4 intros now,sorry bout that,still getting used to modern technology!!I look forward to the chats we may have,thanks.

It's ok Blondie you are simply living up to your name

So sorry to hear your daughter has JHD, how is she doing? Welcome

Tc, Matt.

Welcome!

Carla

Nice to "meet" you!

Hi,thanks for your response.Well I try my best to live up to the stereotype,carn't let the side down!! My daughter is seizing up,unlike the chorea side of the adult form.She can still walk but uses a wheelchair now and again as she tires easily.She's very angry with the world and being a teenager is not easy as it is.How does this illness affect you?

Welcome, blondie. I'm glad you've found us.

Hi,I'm glad I found you too.I've registered with a UK one where I live but no one seems to be ever on it,last post was mine on feb 2nd.Nice to know people are out there and affected by this,it's not as isolating.

Are you in Scotland Paula?

My dad had HD, he passed away last September aged 54. I'm 21 and tested positive at 19, not symptomatic as of yet. I'm in the UK too, in England.

Tc, Matt.

Hi, Paula - I'm so sorry to hear about your daughter.

jl

Welcome to the forum.

Hi, Blondie I'm 41 year old father of 2 at risk kids who has HD ( living in the States ). I hope you can find some other families who can directly relate to what you are going through. The JHD aspect of the disease breaks my heart the most. I have begun a local campaign to create awareness for both HD and JHD. Recently I sent out some videos about both to my friends, and asked them to pass them along. In response, I just heard last night a local Portuguese social club has begun planning a music festival to raise money and awareness for HD & JHD. The event is scheduled to take place this July in Falmouth, MA.

The fact that this group has stepped up, with little effort on my part, to get involved in our cause has given me great hope more, more people will learn about JHD & HD. To me what you are going through is hard enough - to have to do it alone, and need to explain what it is over and over to all the people around you is too much. We may not be able to find treatment or cure overnight, but we can achieve some additional awareness in that time frame, which I hope will bring comfort to families like yours. Please don't hesitate to ask any questions you may have here, and again I hope here you will feel less alone.

Brett T

Thanks to all of you for your replies,you sound a nice bunch!Matt,I live in the north west of England,so you probably wont speak to me now as you scots hate us english ha ha!!My grandad was from Scotland though so I hope i'm forgiven.Brett,i'm amazed at your tireless efforts to raise awareness for the disease.I've probably become more withdrawn from life if anything.Cud you bottle it and send your some of your fight to me?Glad to 'meet' you guys.xx

Hey im Scottish but dont hold that against me....I dont hate the English

Hello Lou,no I won't!!I carn't believe the warm welcome from everyone.I registered with a uk jhd forum but no one seems to go on it,I was the last post on Feb 2nd.I just ploughed through the internet trying to find other forums.So glad to find you all!

Oh a JHD forum, yea I'd imagine that would be quite quiet. You've got this forum and there's also the HDA message board [www.hda.org.uk]

Hi Blondie,

There is an unfair disadvantage to dealing with jHD. There are just not many people who deal with it. We have had several people here over time who have had to deal with it. There are differences with it than adult onset... but there is a sameness as well. Many people here and on the HDA board in the UK have a feel for it. You have to get through "the period where people say I can't imagine if my child had this"... The people who have been through the process do stop in... they will catch you eventually.

Also thinking about it, if you have Facebook Paula I have several JHD families as friends on there who would be happy to talk to you.