Young peoples' experiences of finding out about HD
HDYO has more information about HD available for young people, parents and professionals on our site:
It is important that, as well as getting the parents' experiences of talking to kids about Huntington's disease, we hear the views and opinions of young people who have been told about the disease by their parent/guardians. This will enable us to hear both sides of this difficult topic and gain a better understanding of different approaches and strategies when it comes to talking to children about Huntington's disease. If you are a young person who has been told about Huntington's disease by a parent or guardian, why not fill in the form below, we will add it to the site once it has been checked by HDYO, and parents/guardians will be able to view this section to learn from the various experiences posted below in order to shape their own thoughts on how best to talk to children about the topic.
Send us your experience of HD
My name is Felicity, and I am eleven years old. In 2008, I found out that my Nan had Huntington's disease. I had just turned ten, when my Dad told me. I have recently found out more about HD and I am very interested to find out more as I have a 50% of getting it when I am older.
I am so very glad that my Dad told me as I would hate to not know something about my Nan, as I am close to her. Our family has coped with it well, and so have I. There's only one thing; my cousins do not know about my Nan, because that was my Auntie's decision not to tell them. I respect her opinion greatly, but I prefer to know. Personally, I feel it is wrong to not know about something that has happened, as they also have 50% chance, the same as me.
My Dad has explained everything to me about HD, so I am quite aware of what happens. He has made many friends over the HD Message Board, who I have also met. Everyone is very friendly, and I have also learnt many things from them.
Some people find it hard telling their children if a member of their family has HD, or may not want to tell them at all. Personally, my opinion (as a child), is to just tell them the truth; children are smarter than you think, and can sense things quite easily. I feel the best way is, like how my Dad told me, just tell them little bits at a time, let it sink in, soon they will start to think about what you have said, they will ask questions and all you need to do is tell them the truth. Do not add any other information, as they will ask you what they want to know. Don't be frightened of telling your kids, they have a right to know.
I was told about HD when I was very young, because my dad had been diagnosed with it. I don't specifically recall being told, but somehow I always remember that I was. At the time I didn't think much of it because my dad was in the early stages and his symptoms were not very noticeable. Life carried on as normal.
It was when I hit my teenage years that life started to change, my dad's symptoms were very noticeable by now and he was beginning to need 24 hour care. I felt that, although my parents had told me about HD, they hadn't explained it to me enough. I lacked an understanding of what the disease was and how it affected people, how it affected my dad. And as a result I couldn't relate or understand the changes happening to my dad as he progressed with the disease. This caused me to try and ignore this issue in my life and resulted in a lot of problems for me as a teenager. I don't blame my parents for not telling me more about HD, it is not something anybody wants to discuss, but looking back, I think more education about the disease in my teen years would have been very beneficial for me and I would have coped a lot better as a result.
When my Mom was officially diagnosed with HD my parents decided it would be best to be up front and honest and tell my sister and I at the ages of 9 and 11 years old. I don't remember the exact conversation, but I believe our first conversation went something like “Mom is going to get sick, you might notice some changes, and she will always love you and if you have any questions please ask us”. This was the first of many conversations that slowly progressed to talk more and more about the situation we were in, but the key was the conversations always ended with “we love you and please let us know if you have any questions.” Another thing my parents did that helped me was show us that is was ok to get involved with fundraisers or raising awareness about HD. By my parents choosing to tell me at a young age about HD, HD became part of my life and I learned to accept it. I also learned to teach others to accept it just the way my parents taught me.
The first time my parents told me and my brother about Huntington's was back in 2007. It was one night, when we were all at the dinner table, that my dad started to show visable symptoms of the disease, when me and brother, being the little children we were, made a joke out of it, as we had noticed it in the past couple of weeks. We were saying how he would twitch every few seconds with his legs, that we thought was really funny, when my dad shouted at us to be quiet and stop joking around. Me and my brother had no idea why he acted like this, he never acted this way before. Later on that night, my mum called me and my brother into the living room, as we had gone to my brothers room to discuss (and had a few tears) about the event that had previously happened. When we went into the living room, I sat next to my 'teary-eyed' mum while staring at my 'pacing up-and-down' dad. I remember thinking to myself that all of this was not right, could it be divorce? No that can't be it. What could it be? Then my Mum said to us … 'I think it is time we tell you, your Dad has Huntington's Disease' my immediate reaction was 'Can they cure it?' which the only answer was 'no'. After a long night of my Mum and Dad trying to explain to us what Huntington's Disease was, I went to bed. I had a headache and puffy eyes from where I was crying but now that I look back on it, I am so glad my Mum and Dad told me as they may not have had all the support and fund-raising for the charity as they would have done. Also there are no more secrets and we are closer as a family now as we know we have to support each other in everything we do. Now that I am going to HD meetings, fund-raising and getting involved with HDYO, I feel so much better in myself and I feel like I am making a difference in the world Huntington's Disease … It is hidden no more!!!!
I wasn't specifically sat down and told about what HD was or what to expect. More or less my mom started behaving differently which sparked her being tested. I would have preferred the family to all sit and discuss what the disease was and what research said about it so everyone was on the same page. Also, so that there was no judgements in the family itself - as HD wasn't spoken about publically at the time. I think sitting as a group and discussing what it is and what to expect is best because then you have each other to support right there and also making it more “ok” for those who will be diagnosed positive and have them feel it's an open and safe environment. I more or less did my own research about it which was good but difficult as I was young and didn't have a ton of resources.
My mum had to pluck up a lot of courage to tell me and Jen as she thought that we might be upset about it and the longer and longer she left it the more and more annoyed she thought we would be that she kept it from us and eventually she did tell us when i was 17 and Jen was 16 (thereabouts). At first we were unsure how to take it as it came as such a shock but eventually we accepted it and from then on have been able to talk about it openly and ask questions whenever we need to. I wish that she had told us sooner so we could be involved with the youth organisation earlier but i do understand her fears in telling us and how hard it must of been. It was then easier for her to tell Chloe because she had the support of me and Jen so Chloe got told at a younger age (11) and understands fully and is loving the youth groups.
My father was very open to my brother and myself about HD, which benefited us as we learnt to understand what HD was about and how it was affecting our mum and our family. My Mum had the disadvantage of not knowing what HD was, as her family never told her that she was at risk until her mother died. Due to this my Dad felt that he had to be open on the subject and help us understand. It was incredibly tough knowing that we were at risk 50%, however I felt this helped me prepare for the testing process and generally understand the effects of HD. I felt that being so open among our family helped, and I am glad that my father took the decision to share all aspects of HD with us at such throughout our lives.
I remember the day my mother told me, she had Huntington's disease, as if it was yesterday. The memory of the night will forever be etched into my brain. I was 18 years old, and it was 2 days before my birthday. I was with some friends at my house, and we had been getting ready to go out, and celebrate my birthday. That night I got into a fight with my mom about something stupid and her and I were fighting in front of my friends. I remember feeling embarrassed, but my friends were also used to my mom blowing up over small stuff. As I was walking out the door that night, my mom yelled at me that she had Huntington's disease and that she had known for a few years. I was at the time a rebellious teenager who was at odds with my mom for years. My mom would always get mad at me over the smallest things and repeatedly yelling that she hated me. I never knew why she was always saying such hurtful things to me. Later that night I ended up leaving the party emotional and distressed about what my mom had said. It was raining out, and I had been crying while in the car. I also should not have been driving, since I had a few drinks. I ended up hydroplaning into a car that night on the highway. I was lucky that everyone survived, and no one had been hurt. I want to tell my story to parents contemplating when or if they should inform their children. The way my mom told me was not healthy, and I put the lives of myself and my friends in jeopardy that night. I had only heard about Huntington's disease from my father a few times when I was younger. However, my dad and mom had been divorced, and my mom had told me at the time, that my dad was lying. When my mom starting acting out when I was in high school I started think something was wrong with her, but could not grasp what it was. She was in denial and took her anger out on me, but I could tell that she was suffering from something. My mom should have sat me down when she first started to show symptoms, to educate me on what was going to happen. As soon as I found out that my mom was sick, it was as if I could piece the puzzle of my life together and everything made sense. I have since than built a strong relationship with my mom and forgave her for all the conflict that happened when I was in high school. However, I struggle every day with the fact that if my mom had told me when I was younger we could have had a strong bond when I was in high school. Those had been the last good years of my mom's life, before she got terribly sick. I feel guilty for taking my anger out on her, because I did not know what was wrong with her. I thought she hated me for the majority of my high school. I think it is extremely beneficial for parents to educate their children on why they are experiencing certain symptoms. It is going to scare the children more to, not know, what is going on, than to be educated on what Huntington's disease is.
When I was around 16/17 years old we found out that my aunt was affected by HD. Soon after, we found out that my father and my grandpa also carried the gene. My grandpa was already showing symptoms. He died last year at a respectable age of 83 due to cancer. That means, except for my aunt who died of HD last year at the age of 43, that I am part of a family who has a late age of onset.
When my father found out he was carrying a faulty gene, he didn't really take time to tell us. But that is just how he is. He keeps things to himself and doesn't really want to talk about it. Combining this with the fact that most people in my family presumably showed symptoms at a later stage of their lives, made me not care that much. When I was 18/19 years old I did some research and became worried and somewhat scared of what might happen. So, from my experience I would say that, as a parent, you should inform your child (depending on his or her age) about every aspect of HD and what this might mean for each family member. It should become understandable and it should not have to be difficult to discuss such an important topic at home.
When my mother found out she was at risk, she decided that she didn't want to undergo a predictive test and live her life as if HD was no part of it, and that if symptoms one day would show, she would deal with it then. Therefor she also decided she didn't want me and my siblings, or anyone else, to know about HD at all. My father did know, and he respected her decision to make HD part of her life when it became accurate, but when the time came and my mother started acting strange she didn't want to face that fact. She denied it, which later led to my parents separating when I was 9 years old. I didn't notice my mother's early symptoms while she was living with my dad, but when her life changed so drastically after the separation, symptoms started to show very clear and very sudden. My siblings and I still didn't know about HD, since my mom was in denial and my dad still wanted to respect her and let it be her thing to tell when she was ready. We speculated and thought she acted weird because of the separation and everything around it. People started asking. My friends started asking. My mother got into fights with my friends parents. I hated that she embarrassed me, so I was always angry with her and I always insulted her. I always screamed at her to “God dammit mom, stop moving! Stand still! You look like an idiot!”, “Stop moving like a drunk, you're embarrassing me!”. I wasn't easy on the insults. After finding out she was ill I could never forgive myself for how I treated her during that already hard period of her life. No one was nice to her, not me, not my siblings, not people in general.. not even her mother was nice to her. Everyone who knew what it could be was in denial, and the rest of us just didn't like the was she acted.
When I was 13 years old my father just felt it had gone to far, he saw us unlike our mother for how she acted weird, and he heard people talking about her. He also saw us suffering, in the way that kids do. My sister got really aggressive, I got extremely quiet and shy. He didn't want to wait anymore, when it was so obvious what this was, and he understood that my mother wasn't going to tell us either. So he gathers us, my siblings and I, and he told us that our mothers father had Huntington's disease, and that he committed suicide before we were born because of the depression it caused him. Then he said that every child of a person who has HD has a 50% risk of inheriting the gene, and that our mother with most certainty had inherited HD, and that was why she acted the way she did. He briefly mentioned some well-known symptoms of HD and that there was no cure nor no modifying drug, and that it deteriorates you until it sooner or later leads to death. He said our mother having HD also meant we had a 50% chance of inheriting the gene. He said that science is developing fast and that there might be a modifying drug available quite soon, and even a cure in a few years, but that we could not know how soon, or even if, a drug could be available for us or our mother. He decided to tell us everything, not to hold back on any information, just let us know everything. He was specific and honest, and I'm truly grateful for that. It would have been harder to hear one part, and when learning to live with that, having something else put on your shoulders. A few days later my dad took us to see a genetic counselor who explained more about the disease itself, since he didn't feel comfortable with himself giving us fully correct information. He also insured us we could meet up with the genetic counselor anytime we needed to ask or talk about something.
It the point my dad told us I couldn't really let it all in, I even laughed a little when he started talking, not at what he was saying, but at the seriousness in his voice and the quietness of the room. He didn't blame me for it. He just continued. For several days the facts didn't touch me that much, it slowly got to me what he had said. It felt good to understand why my mother was acting strange, it wasn't that hard to hear people talk anymore because I knew why and I knew it wasn't her fault. I didn't care as much about their words, I got mad at them for being stupid and not at my mom for being embarrassing. I got nicer to my mom, and the guilt of how I had treated her before came quite sudden. It was hard understanding that my mother wasn't going to get better, that it would only get worse, but it still felt good to know the truth about it. It was all hard to deal with when the facts started to get through to me, but those were the facts, and the facts wouldn't disappear just because no one told me about them. For a long time I blamed everyone who knew and didn't tell us, because dealing with the guilt of how I treated and felt about my mom before knowing, has been harder than any of the other facts. And I'm always thankful to my dad who finally broke the silence and let us in on the truth, he gave us a chance to deal with what was really happening.
When I was about 12 my Granddad fell off a ladder, I'm not particularly sure how but the doctors discovered that he had Huntington's Disease. At first I didn't really know enough to have a proper reaction, so I thought it wasn't a bad thing.
But then my mum started telling me the information about the symptoms. She told me that until she knew if she also had it, that I should not worry, but reading the list of symptoms she printed out, I started to feel that I had it. Slowly I convinced myself this was unlikely as my mum might not even have it, then she tested positive. I was about 13 at that point, my theories about myself having the symptoms grew and I was very upset.
I'm 15 now and after talking to a councillor I understand everything. I still get upset, but it's easier to deal with. So I suggest that letting them talk to a genetic councillor to answer their questions or whatever when telling them would make things a lot easier.
I think HD should be brought to the publics attention, there isn't enough awareness about the disease. I had never heard if HD until my mum was diagnosed. For years I cared for my mum because i knew she was ill but I didn't know what exactly and for years I spent time arguing with her because I thought she generally hate done at times however I have came to learn about HD and I now know that it's all part of the condition if I had known I could have done things differently.