Huntington’s Disease

[truffletrot]

Any Tattlers here with a diagnosis of Huntington’s Disease or have it in their family?

I’m waiting to be tested after Dad tested positive for HD. I’ve got a 50% chance of having it. It’s all a bit crap!

From the NHS website: “Huntington's disease is a condition that stops parts of the brain working properly over time. It's passed on (inherited) from a person's parents.

It gets gradually worse over time and is usually fatal after a period of up to 20 years.”

 

[JoeBloggs]

I’m sorry I don’t have more to add. There is a lady on Instagram who’s mother has it, she used to be called the bees knees but I think she’s changed it. Her name is Kelly.

 

[CatCafe234]

My partner’s mother had Huntington’s - she passed away with it a couple of years ago. It is a very difficult condition to live with, although our experience is coloured by the fact that there were lots of family issues that meant that my partner’s mum didn’t access or accept a lot of the treatment she needed. I would say that if you are being tested, make sure that you get the counselling too as a diagnosis can be hard.

 

[Jc456]

I don't have HD in the family but I follow Kellyterranova_ who's mum does.

 

[BettyCrocker]

Have a look at Kelly Terranova on Instagram- her mum has it and her & her sister both have been through the process of being tested for it and although neither of them has it she does talk a lot about it, I’m sure she would also be happy to answer any questions you have about it if you drop her a message?

 

[truffletrot]

Thanks everyone so much for your replies, I’ve looked at Kelly’s IG and watched the interesting documentary clip she posted

@CatCafe234 did your partner ever test for it?

I had never even heard of Huntington’s disease, until my dad got vascular dementia and he asked to be tested for other things. That’s when they found the HD (January 2020, a day after my sons 2nd birthday ). When they told me I had a 50/50 chance I just thought ‘oh whatever’ because I really thought it was something that affected you later on, in your old age. When I got home and googled Huntington’s disease it felt like my life flipped on its axis completely. It upsets me as well that I didn’t know this before I had a child .

I don’t really have many people I can speak to about this because of 1) the pandemic, and 2) when I try to talk to my husband/parents I get a lot of “toxic positivity” as it’s called - a lot of ‘you’ll be fine’s or ‘you won’t get it because you don’t look like your dad’. I want to scream at them half the time and give them a frigging crash course in genetics the other half

 

[CatCafe234]

@truffletrot No, he hasn’t been tested. It’s really difficult as his parents kept the diagnosis secret for quite a long time - my partner knew his mum wasn’t quite right but his dad was a difficult man and they never really talked about what was actually wrong. It’s stupid to be ashamed of being ill but I think there was/is quite a bit of stigma around Huntington’s and to be fair, it‘s not an easy diagnosis to accept - I am so sorry to hear about your dad and I really hope you’re also getting some support too. My partner hasn’t wanted to get tested and all I can do is support him in his decision. If he wants to change his mind, he can.