HDYO Interviewed 8 young adults who have gone through testing for HD
They told us how they coped and how they've felt in the years since their results
my name is Emily I'm from Ontario Canada and I am 27 years old I was tested five
years ago and my test results were positive for Huntington's
I remember thinking specifically that I felt like I had been hit by a train once
I was told I just turned and looked at my husband and my mom and I was
apologizing profusely to them for the fact that they would have to take care
of me I just like remember sitting up like I was keeled over crying and then I
sat up and I was just like okay so what do we do I had two people with me and I
looked to my right and my left and I was like can you read that again and she is
like Natalie you tested negative Huntington disease know that can you
read it again because I didn't not think there was a way I was gonna test
negative I could see in the eyes of the the
doctor that gave me the results that it was weird for her to see me so surprised
because she was expecting happiness out of me at the moment itself I have to
admit I wasn't feeling anything you always double-check that situation like
good result as in it's a lower repeat count or and yeah he doesn't really
my first feeling was
relief I have a daughter and she was just over a year old at that time and to
know that she was never going to be at risk it was the biggest relief
Before testing
I didn't want to get tested for a really really long time I didn't want to change
the way that I lived my life and it was honestly just like a flip of a switch
and I wanted to be tested I had spent my entire childhood with a father who had
Huntington's and my whole childhood had been controlled by Huntington's and I
felt that the one thing I could do to control it was to figure out what my
future was going to be
leading up to it it was a very chaotic time in my life it was stressful
because I was a caregiver for my mom and she was getting into the stages where we
couldn't keep her at home anymore so in order for me to really process my
results I had to make sure that she was in long-term care I was consumed with
thoughts of HD and researching and watching videos and and doing anything I
could to find out more and planning for my future before I got tested I actually
planned everything that I would need if I was positive to prepare to have kids
going the route of IVF that period was kind of a bit better because I was
certain I wanted the results I think the hardest part was six months before that
when I was still decided and trying to think about each possibility and whether
I really wanted to know
After testing
I wasn't so much concerned about myself but how other people would perceive me
knowing that I had Huntington's there's really emotional about it
that first week I hadn't told my parents and I think one of my biggest worries
was like telling my parents and then my mom feeling bad it's not her fault
obviously but that's just who she is so she I didn't want to break her heart
especially because she's symptomatic I was feeling really bad because of the
guilt after knowing you got away with it and other didn't it took a year took
over a year to sink in and to process things and to make a new life plan my
whole life I've been at risk for Huntington's disease and then to
suddenly I'm not a risk that was something that took a while I think a
good year to kind of come to terms with it and rebuild motivation
Reflecting on the decision to get tested
I don't know if I'm necessarily happy I got tested overall but I would say that
I probably am because I think that now I don't have the questions of what if I
don't live wondering if I'm gonna have it or not it's not the answer I wanted
but it's an answer and so now I can accept that getting my test results
really made my bond with my husband much stronger he was incredibly supportive
through the entire process and I felt that it was really important that if we
were going through to get married but you know I put all my cards out on the
table and I said you know this is me you can take it or leave it and I couldn't
seem to get rid of him for me it was the right decision but over time I've
started to realize that this is probably one of the most personal decisions that
someone can make in their life and I'm more understanding of why others would
choose not to test while it was so clear to me that I had to no matter what
result you get and when you get tested Huntington's doesn't leave your life
even test a negative in my whole family are affected I see patients every day
you know it's always gonna be a difficult thing to deal with and
there's nothing I'm I still struggle with thank you
that's not pretty a result you can celebrate too much
The future after testing
I'm at a really good place now I have two beautiful children I know that
they're not going to develop Huntington's I have so many positive
things that have come out of this experience and I think that it's really
brought a lot of things closer to home in my family actually the only person
left at risk is my sister we're not a big family I know that were closer
together now as a family than before and that we can count on each other even if
something would happen or if my sister will develop the disease I know we would
be there for her and for each other if I had any advice to give my younger self
would be to don't push people away especially people that love you and
people that are in relationships with you some people really will stay with
you and to assume that you don't want to burden them is a mistake because we
can't go through life alone I was incredibly lucky to have an amazing
support system around me it can make all the difference in the world just knowing
that you have someone to talk to you someone to rely on and to have a
shoulder to cry on I'm going to school to get my masters in
social work right now and I want to help people in the HD community I want to be
there for them I want to share my experiences and to help them with theirs
I want to help them through their hard times because I've been there and I can relate
it really gives you a sense
of immortality really you know knowing that there's this possibility that you
might not be able to have 50 years to live out your dreams and to do the
things you want to do so I'm trying to make the most of every day I've been
very privileged to be working in HD research and I'm be really immersed in
the HD community as a whole so not just the research community but you realize
how many people, such amazing people are working together to change
the dialogue for HD families and instead of being the secret and the
hidden kind of horrible thing and family I think with the research right now it's
so exciting that they're testing a drug in people and people that are affected
by this it's not just mouse models and all this other stuff that's great
research but it's just taken that like next step of excitement and I think it's
almost re lit my fire of hope and I thought my fire of hope is gone and it's
not so that's awesome
Thank you to the 8 young people who bravely shared their experiences