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Huntington's disease test results tomorrow, need a hand hold.

(150 Posts)
ganachetart Tue 03-Sep-19 01:05:53

I never really knew my father or his family, he wasn't involved in my upbringing and I had a wonderful DM and stepdad who gave me an amazing childhood. DM did know that my biological father had HD in the family (though they only had a brief relationship) and first mentioned it to me when I was a teenager. DM said if I wanted to we could see a doctor but I said no. If I'm honest I never really thought about it or researched the disease, I guess that because I had so little to do with my biological father I just wrote the genetic component off as well, likely as a way of coping.

I had DD at 19 and I'm now 24. I've been avoiding the HD all my life basically but I now have a wonderful partner and we have been talking about a second child and it brought HD to the forefront. I already feel guilty about having DD without being tested but I try not to beat myself up about it, I was young and she's amazing. I decided before getting tested I might as well find out if my biological father even had it (his father did).

Spoke to a cousin who confirmed my biological dad did have it. This almost made me try and contact him but I changed my mind at the last minute, I had enough on my plate and the support of my DM and stepdad. Went about the process of getting tested, I first spoke to my GP about it in January and am only getting my results tomorrow! As they keep you waiting and there was also one occasion I changed my mind and then changed my mind again.

DP is taking the day off work to come and get the test results with me. We're dropping DD off at school together and then the appointment is at 1, I don't know what we're going to do between then as I will likely be a wreck. It's very much a 50/50 chance.

I am so so scared. I have watched videos and seen documenteries about it and it's such a cruel illness. There are things I want to do with my life, such as have another baby and then I wanted to go to uni after he/she is in school because I never got the chance having DD so young. I just know if I get the diagnosis it will all feel pointless and like a countdown to me losing my faculties, and I'll lose any motivation. It's horrifying. And it's not just me this'll affect, if I have it then DD has a 50/50 chance as well. I feel so guilty about what she may go through, and even if she doesn't have it and I do, my illness will still affect her as she grows up. And DP is a wonderful man who I think I will be with for the rest of my life and I hate the thought of him seeing me decline over the years.

I know this isn't an AIBU topic but I just need a handhold, and I could do with some replies to read tonight as no doubt I won't sleep.

OP’s posts: |
Notcool1984 Tue 03-Sep-19 01:11:12

Sorry, hoping for the best for you. Please let us know how it turns out x

buttonz Tue 03-Sep-19 01:12:42

How terrifying for you - good luck

WelcomeToGreenvale Tue 03-Sep-19 01:12:50

Didn't want to read and run. I don't have personal experience with Huntington's but if the diagnosis is positive you must remember that you still have so much time.

All the best for tomorrow. flowers

Chillyourbeans Tue 03-Sep-19 01:13:27

I don't know what to say but I couldn't read and run. I'm awake because DD is starting high school and I'm worried her kilt doesn't fit - so utterly bloody trivial compared to what you're going through. I hope so much that the results go your way flowers

SleepWarrior Tue 03-Sep-19 01:15:39

Hand hold here too. What a lot you've had to carry around so far, hopefully knowing either way will be helpful for you.

Can you do something distracting but low pressure tomorrow before the appointment - like a daytime cinema trip with loads of yummy snacks.

BringMoreCoffee Tue 03-Sep-19 01:21:24

Best of luck for tomorrow xx

The waiting is often the worst bit - once you know, either way you can start to process it and move forward.

MintedLamb Tue 03-Sep-19 01:27:24

Hoping for good news for you tomorrow x

Rachelover40 Tue 03-Sep-19 01:31:30

I can imagine how worried you are, ganachetart, and I'll be thinking of you.

Bringmorecoffee said: The waiting is often the worst bit - once you know, either way you can start to process it and move forward.

I agree.

Please come back and tell us. xxx

kitty4paws Tue 03-Sep-19 01:33:56

I truly hope it is good news

Lonelykettleshed Tue 03-Sep-19 01:35:09

Good luck. I've had the test (thankfully negative) and know how scary it is. Try to take some comfort in the knowledge that you are not alone, the hospital counsellor obviously thinks that you are strong enough to cope with the uncertainty and, should the worst happen, it is likely to be years before you develop symptoms and drugs to halt progress/cure may be available by then.

Fingers crossed for you.

ilovesooty Tue 03-Sep-19 01:39:03

This must be so frightening. Good luck for tomorrow.

Skittlesandbeer Tue 03-Sep-19 01:58:54

A good friend of mine has HD. He found out as a young adult, tested at the same time as his sister (who tested negative). It did throw him for a little while. He had loads of support from HD associations, which no doubt you’d be put in touch with.

He is now in his early 50’s, and still almost symptom free. Far longer than anyone expected. He’s followed research carefully, and maximised his chances for high quality of life. He’s ‘really lived’ more than anyone else I’ve ever met. Married, had kids via IVF (they select negative embryos). He had loads of hobbies that he knew would be harder to do once symptoms kicked in. He also started hobbies that he knew he could keep going with even when symptoms increased. So in the first category things like sports & photography, in the second category music appreciation and gardening.

He rationalised that his lifespan is actually more than most previous generations of human (bar the last few). And that he could still just as easily be hit by a bus tomorrow as anyone else. He has the best ‘end of life plan’ I’ve ever seen, and that gave him a big sense of comfort.

Now I think of it, he’s lived several lives in one. He’s been a terrific friend, son, husband and dad- partly because of his HD diagnosis. Not despite it.

Good luck with your appointment, and if it shouldn’t go your way, don’t despair. There’s lots of help, and opportunities, for people with HD. And congratulate yourself on being so responsible and going through testing before having another kid.

DramaAlpaca Tue 03-Sep-19 02:01:42

A handhold & a <hug> from me flowers

Boscoismyspiritanimal Tue 03-Sep-19 02:16:01

Handhold OP 💐

Ornery Tue 03-Sep-19 02:33:10

My friend got her results a couple of weeks ago in her mid 30s, after putting it off as long as she could. She has at least five affected family members, some with untested children, and her mum has been in a residential facility for over twenty years. It’s such a hard thing to do, but you are doing the right thing. Whatever the outcome, at 24 you can figure out life around it, and advances are being made all the time.
<gentle squeeze>

Lweji Tue 03-Sep-19 02:33:14

Fingers firmly crossed for you.

A neighbour had it and it destroyed his family. He had kids before realising he had the disease. His mother had it but they didn't know what it was then.

You're doing the right thing by testing.


LunaTheCat Tue 03-Sep-19 02:50:15

Couldn’t read and not respond. I can’t imagine how you feel but lots love .
* beer* your friend sounds amazing. Life is so short and precious. We take it too much for granted.

RightYesButNo Tue 03-Sep-19 03:22:18

Ok, you get a hug and a handhold and some encouragement.

I’m so sorry you’re going through this and I’ve been in the same spot of waiting for a diagnosis, and in fact, getting the diagnosis and then knowing that eventually I will start to lose abilities due to my disease. Sure, some days I can’t help but focus on how it feels like my future has gotten hopelessly tangled and shortened. BUT if, IF you get a positive diagnosis, and I hope you won’t, you cannot live your life like a countdown, wondering if every tic or depressed day or mood swing is a sign that your Huntington’s is active. You can’t do that to yourself and you can’t do it to your family.

There are barely 15 comments here and already someone has shared a story of a friend who is almost symptom-free into his 50s, so you know it’s possible, and that would be 30 years for you. Don’t let those thirty years go by in fear and despair. You can still do the things you want to do, and you can definitely be a wonderful mum. It’s okay to have days that we’re afraid or angry or sad, but we can’t let them steal the lives we were born to live.

If all goes well tomorrow, hopefully you won’t have to worry about this and the day will pass with good news. But, just in case it doesn’t... you can still have a beautiful life ahead of you.

Cantcopewithheranymore Tue 03-Sep-19 03:24:35


BobbyPuck Tue 03-Sep-19 03:28:34

Good luck, OP flowers. Yiu sound very brave. [unmumsnetty hug]

JustOneLastThing Tue 03-Sep-19 03:56:35


Emelene Tue 03-Sep-19 04:22:25

Good luck OP xxx

Doryhunky Tue 03-Sep-19 04:34:53

You sound very level headed. Hope it goes well!

CharlotteUnaNatalieThompson Tue 03-Sep-19 04:36:19

@RightYesButNo have a hug. What a wonderful positive attitude.

I was about to come and post similar to you and @Skittlesandbeer about living with a terminal illness. Not HD in the case of my friend, but metastatic breast cancer. She had 8 years of living with this, and she really really lived and probably got more out of that short time than most of us manage in far longer, because she knew how precious that time was.

I'm not trying to pretend it won't be devastating if you get a positive result tomorrow, and as part of processing that and moving forwards it's totally reasonable (and normal) to fall apart for a while as you process it all, but please don't let it ruin the rest of your life. That would be a real tragedy if so.

Fingers crossed for a negative result, but even if your week order fears are true you have time to really live, to see your daughter grow up, and do all the wonderful things you had planned x

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