As Promised I am keeping you all up to date on my testing. I just received a letter today letting me know I have an appointment with the genetic clinic on March 7th. This is where I will be put through an evaluation to see if I am strong enough to hear the results. If I pass the evaluation I will be given the blood test and should have the result 6 weeks after. So what am I feeling? Well when I got the letter I couldn’t stop crying. It just really hit me I am going to find out my future very soon. Although I am very excited to finally find out, it was a lot of emotions that hit me at once. Currently my chances are 25% as my father has not been tested and has chosen not to. I have not had any communication with him for 2 years and have no idea if he has any symptoms, with that being said I feel anxious about how the outcome will end up. I try and keep positive but as a human I can get really stressed out about it with all of the what if’s. All I know if I am happy to finally get the result either way to help a lot of those “what if’s” finally get some answers. I will let you all know how my evaluation goes and keep you posted on my next steps! Bye for now!
The testing process can be a very emotional experience. Don't be too alarmed if you're up and down like a yo-yo at this point.
Sharing your feelings is wonderful and you've been brave enough to do that on this forum already. Do you also have support from people close to you?
Remember, you can always stop the process whenever you want to. You have that right up until your results are given to you.
We are here to listen and support you.
I'm only 13, (so I have a lot of time yet), but I have thought about having a test when I'm older. I'm so glad that I know that I do have a risk of being positive, because it can help me in the future. The only thing I'm worried about, is having children. I would of course like to have kids when i am older, so when I decide to having children, this is probably when I'll get tested, whether I'm positive or not, will have to decide whether I have kids or not. I don't want to carry this gene on, of course.
That sounds like a very responsible position to take, and it is great to see that, even at 13, you can opt to make responsible decisions like that.
You also have lots of time to think about these decisions and there is always plenty of information for you on the HDYO site - which will remain up-to-date too!
Thanks for sharing your thoughts Felicity!
I'd love to head over to Europe and visit some of the major war sites, as I really enjoy studying history as a hobby. I want to be successful, and be happy in my career. Eventually, I want to have my story be heard, whether it's through a blog, a book, or speaking to groups. And the last thing on my list, is to be tested... eventually :P
Emily, it's better to be tested later than too 'fast'. I mean you must be prepared for the result (positive or negative). It's not easy, talking to young people who have been tested could help you :) And of course feel invited to Poland, I can be your tourist guide :) We have plenty of beautiful places here, in a 'historical aspect' too!
It's amazing reading everyone's stories, and seeing how people deal with testing in different ways. I got the letter through the post today saying that I have an appointment in 17th April to get my results. I had my first counselling session in October last year. All through the process, while spending time talking with my husband (who is also at risk, but not being tested) about what we would do if the result comes back positive or negative, and sharing our own experiences, I just feel like it's a question I need answered. I haven't been stressed, or worried about it and what the result may be. It's the not knowing, and therefore not being able to plan the future that is getting to me! It may sound daft, and I know as the day gets closer I will get more emotional, but at the moment, it's just this big question hanging over my head and waiting to find out the answer is bugging me!
It sounds like your testing process has been going on for quite a while. But it also seems you have discussed every possible outcome with your partner and put a lot of thought into the whole process - which is great.
You've done really well not to get emotional during the process. However, as you point out, it can tend to get more emotional as the results day looms nearer.
I wish you all the best for April 17th, it would be great if you kept us in the loop as to how you're feeling during the next few weeks and how the day itself goes for you.
Well yesterday was the first time I admitted to myself that I'm scared. Up until now I've been looking at both sides, what will I do if I don't have HD, what will I do if I have it. Now with less than a week to go, I keep thinking about me sitting in the room at the hospital, having someone tell me. I hadn't realised it up until now, but I am scared of what they are going to say. My husband was away working yesterday and on night shift last night, but he realised it too yesterday. It was the first time I've heard him properly talk about his feelings and how he's dealing with this.In reply to Matt
The testing process does tend to get more 'real' as results day gets nearer. You mention being scared, how are you feeling in general about finding out whether you are positive or negative?
It is also a tough process for your partner too of course. When your husband shared his feelings with you the other day, how did that go for you?
I wish you all the best for results day and the future. Would be great to know how you get on!
MattIn reply to Rach
I'm 15 years old so I have a couple of years to decide what I'm going to do, but I'm finding the decision really hard at the moment because both my genetic councillor and my mum said I should wait to be tested, but I just keep getting worked up on the "what if" side of things. I would really like some thoughts from others in this situation.
Hi Elli, I would try and enjoy your teenage years and take your time to decide over the next few years. Hopefully by the time your old enough to be tested you will have decided if it is the right thing for you :)
I am 21 and have just decided to be tested. I didn't want to be tested when i was younger but now i feel like the time is right for me to find out.
You'll know when the time is right for you...you may decide you don't want to get tested until your much older. My sister is 27 and she hasn't been tested as she feels like its not the right thing for her. Everyone deals with it differently and there is no right or wrong :)In reply to Elli
Thanks Melissa! I will take your advice and just wait until I feel like it's the right time.In reply to melissa1991
That's ok :)
How do you feel about being at risk?In reply to Elli
Welcome to the HDYO forum and thanks for sharing your thoughts on testing.
It sounds like you have been thinking about testing a lot recently and that you have already seen a genetic counsellor, is that right Elli... if so how have you found speaking with the counsellor?
A lot of young people at risk for HD between the ages of 14-16 (ish) think about testing and say that they want to know. But what usually happens is that young people often change their minds as they get older and decide they would rather wait to be tested until a later time when they feel it is right for them to test.
Also Elli you mention that you have a couple more years to decide about testing. I just want to say that it is important to remember that you don't need to 'make a decision' by the time you reach 18 as to what you are going to do. You can remain undecided about testing for as long as you want. Many people never get tested, some test in their 20s, 30s or 40s etc. It really depends on the individual - it depends on you Elli and what you feel is right for yourself.
Testing is something to be absolutely sure about because sometimes people (of all ages) make decisions they think they want to make, and then years later wonder why they made that decision. So it is important that when you are thinking about testing, you are thinking about whether this is something you can live with for the rest of your life. But there is no hurry to make that choice Elli - it is entirely up to you.
Melissa, in answer to your question I am not to bothered about being a risk, my main worry is how it affects those around, for instance my older sister is in the same position as me and I just worry for her sake.
Matt, I do find it a lot easier to talk to a genetic counsellor about this stuff as he knows other people in the same situation and uses what he knows to help you. So I would recommend that if people are curious or uncertain about the situation they should talk to a genetic counsellor as it's all confidential.
I am glad that you find it easy talking with the genetic counsellor and it seems you have a good relationship with the counsellor which helps a lot.
You mention your older sister is in the same position as you and that you are worried for her. It is very common for young people to be worried about their at risk siblings, I am wondering have you spoken to your sister about how she feels about being at risk and whether she has thought about testing like you have?
I haven't really spoken to her about it, not that I don't want to. She never mentions the fact she's at risk and didn't go to the appointment my mum set up for her with the genetic counsellor, so I'm scared if I mention it, it will upset her. But not knowing what she thinks about it worries me.In reply to Matt