At first it was really scary, even after I learned more about the disease. Sometimes it still is.
This is a ugly disease and is terribly hard to deal with but I know now that I cannot let myself worry about how this disease will turn out, but instead love and live to the best of my ability and trust in God through it all. :)
My Dad’s personality was conflicting against his HD from the start; by this I mean he was stubborn and determined to do as much as he could in life. His attitude has rubbed off on me and my sister; we have decided not to be tested unless I notice symptoms. This is because I believe there are so many diseases that any of us may get, there is no point worrying. My dad is a prime example; he was in the later stages of HD and he ended up dying of other causes.
I might be naive but at least I know that finding out would be the end of me and there is no point putting myself through the struggle and depression for peice of mind.
It is not naive to think that HD isn't the only condition or event that can impact on life. It is certainly true, and if you feel that knowing whether you had the expanded gene or not would not be productive for you then you are doing the right thing for yourself by not testing. The decision whether to be tested or not is yours, and will always be yours. You're doing the right thing in listening to your feelings and respecting them.
It is great that your dad's attitude to life has rubbed off on you and your sister! Despite a person having HD, they can still make very meaningful contributions to who you are and how you see the world. It sounds like your dad has done just that for you and your sister, which is great to hear.
Thanks for posting!
I’ve known that I’m at risk for about 9 years now. In the beginning I was pretty much in denial about it and thought I was dealing well, so didn’t speak to anyone regarding, as my family didn’t speak about it. Was treated like some secret we do not speak about of. My mother told me about my Dad and that I shouldn’t tell my other siblings because she wasn’t sure how they would take it. My dad didn’t know that I knew and so on so forth was a bit of a messy situation. But like I was saying I thought I was doing all good until it hit home and I really felt alone and had no one to talk to. Eventually my family could not hide it any longer and it’s more open, so talking has been a really good coping mechanism for me, to talk about how I feel and being honest with myself. I think it’s something that will always be in the back of my mind and will creep up every now and then whether or not ill get tested but for the meantime I’m just happy to live life and not put it on the to do list until I’m ready. Everyone is different though. My older brother is just waiting for his results now and he was the opposite it was something that was playing on his mind and he feels that he can find peace in having a test result, and I can understand that too. We are all individual with different backgrounds, circumstances, personalities and they all play into how we choose to endeavor on our HD journeys. Much love xoxo
PS. This site is really great has an awesome positive feel to it and loads of helpful information
Welcome to the forum and thank you for sharing your experiences. I'm glad you like the website and that you've found the information useful!
It sounds as though you found HD more difficult to deal with when you were not able to talk to your family about it... is that right?
You are absolutely right about testing being an individual choice and we are all different, so make different choices and different moments. It sounds like your brother has thought about the reason why he wants to be tested now and that seems like what he wants to do in his life. Equally you seem to have many valid reasons for not testing yet... as long as you are both comfortable with your choices then they are two different decisions but both the right ones for each other, which is how it should be. Are you and your brother supportive of each other....
Take care and thank you for posting!
Welcome to the forum, and thanks for sharing your experience with everyone! It seems as though having your parents be so up front about Huntington’s was a good thing for you because it allowed you to live in the moment and reach for you dreams. Knowledge is power. You said that now the feeling that has evolved and made you appreciate how precious life is. What sort of things did you learn to appreciate that you may have taken for granted before?
You mentioned how you used to feel as though beyond the age of 30 was a black hole, but that made you be able to live like each moment was your last. How are you feeling now about being at risk for Huntington’s disease…has anything changed?
Thanks again for posting!
You seem to be so grateful for everything you have and each and every day. That is something to admire and look up to! It is hard to stay positive and live in the moment, so congratulations on achieving that. It seems as though having that positive attitude has helped you immensely. How was your journey to get to that place?
Hi, I'm 16 and am a risk of HD. My mum had it but she got it when i was quite young so now i have quite a few questions. My mum developed HD in her late twenties and so i was wondering that if i have the gene will i develop it at about that time? And when my mum passed she was completely dependent on other people, does HD always get to that stage with everyone?
I'm going through a phase where the idea of not knowing is getting to me but i know i have to wait until i'm 18 to have the test, why is that? I'm also not sure about what the test involves and how long it takes?
Sorry for all the questions but i hope someone can help me.
Welcome to the HDYO forum. I really appreciate you reaching out and asking questions. There are never too many so don’t feel bad! That’s what we’re here for ☺. I’m very sorry to hear your mum, Jess. I lost my mum to HD as well, so I can appreciate how you must feel.
HD affects everyone differently, and the time of onset can vary between families and between people within a family. Although there does tend to be a trend towards parents and offspring having similar gene expansions, it’s not set in stone. Have you checked out our page called ‘What is HD?” It’s a good introduction to HD and answers a lot of questions. Here is the link to get you started: http://en.hdyo.org/eve/articles/57.
You mention the process of testing for HD. How are you feeling about it? It is a very personal decision and one that only you can make! I believe it’s advised that you wait until you are 18 to ensure you are mentally prepared for the results, whatever they may be. You are certainly welcome to talk to a genetic counselor in the meantime to get more information about what it involves and how long it takes (time can vary). Do you know of one in your area? I could help locate one if you need!
Thanks for sharing,
No problem, that’s what we’re here for! You have a few options you can look into to help figure out whether or not you’d like to get tested. You could either go see your family physician (or any general practitioner) and have them write a referral to a genetic counselor (they should know of some) or you could email Adam, who is the HAD youth worker for England and Wales. He may have some good information about who to contact! His email address is firstname.lastname@example.org. I hope that is helpful! Please let me know if there is anything else I can do to help.
I feel sick to my stomach knowing that I potentially have this gene in me that could erupt in my 40s (I'm 26 yrs old). Mum feels guilty because she's the one who had HD, and to make things worse, the doctors said that she has started a new genetic mutation; no one else in the family has had HD. How rare is that!?! Anyway, I am in 2 minds about getting tested or not. I'm scared I'll feel worse after being tested, and guilty if I have the gene and my brother doesn't (or vice versa). Wondering if you could recommend anyone (potentially in the psychology field) that I could discuss all this with? Are there specialist psychs who deal with HD? Thanks.
Welcome to the HDYO forums and thanks for sharing your story with everyone. I was wondering where in Australia you live? I know there is an HD team in Melbourne that is led by Dr. Andrew Churchyard. Have you and/or your family been in contact with him before? This is who HDYO would suggest you speak with if possible, regarding deciding whether or not to test. Who has your family been in contact with in the past? I can get Dr. Churchyard’s contact information for you if you are interested…just let me know!
Hi Jess, I'm also 16 and at risk of HD and I feel exactly the same about how not knowing whether or not you have the gene feels slightly worse than knowing. I've spent a lot of last year thinking the worst of everything, but with help from a genetic counsellor, and friends I didn't worry so much about the questions of whether or not I have it. I'm not sure if this helps or not, but I just thought you should know you are never alone and a good support network can make things easier. :)
I'm almost 21 years old, and I'm anxiously waiting to get my test results back. I've lost my grand mother and aunty to his disease, and my mum currently has it. The testing process though has taken me a year. In a way I'm glad it took that long because it made me realise if I was truly ready for this big step. The main reason I want to know if I have inherited this disease or not is so I can be prepared for the future. If the test comes back positive I will definitely be upset and scared, but also relieved.
By the way this webpage looks like it's just what I needed :)
Welcome to HDYO! You have come to the right place for support and information.
Testing can feel like a roller coaster with all the emotions that you have to work through, but you sound like you are keeping a positive attitude.
When did you find out that you were at risk?
Let us know when your testing date is and we will have our fingers crossed.
I was about 12 years old when I found out my mum had the disease and that I had a 50% chance of inheriting it. But at that age I didn't completely understand what that meant for me and my future. I had the blood test taken in December last year; so hopefully I will hear back soon. The health system here is very backed up at the moment though.