The Impact of HD on Young People HDYO wanted to create a video that highlighted exactly what it is like to be a young person impacted by HD. So we interviewed 21 young people and asked them to share their personal experiences. The following video is an eye-opening insight into the impact of HD on young people and the challenges they face in their lives. You may find some of the clips upsetting. Interviewer: Who has HD in your family? Zach and Megan: Our dad Whitney: My mother had HD, my uncle has HD and grandmother had HD Kelly: My dad has it and my grandma had it but she died from it Laleh: My grandpa had it and he passed away a few years ago so my mum and her two sisters are at risk Johnna: My grandma passed away from HD and my dad currently has HD, and my sister just tested positive Gabrielle: Our dad has HD as well as our aunt, uncle and one of my dad’s cousins, I think his mum and grandfather had it aswell Destiny: My mum passed away two years ago from it when she was 38 and my 19 year old sister is now symptomatic Erika: My dad had HD and my sister has HD Interviewer: How long has your mum had HD for? Emily: She was sick for about 15 years before she passed away Jaime: Almost 15 years my dad since he was diagnosed Destiny: For as long as I can remember, I mean I grew up with her always having it and showing symptoms Interviewer: What kind of symptoms does your dad have? Zach and Megan: He has movements… he has trouble eating, he drools a lot Zach and Megan: He is in a wheelchair… yeah he sleeps a lot, he is in a wheelchair because he can’t walk too well anymore Gavin: Movement problems and behavioural problems, she will forget things Ashley: The movements all around and he had trouble speaking too Seth: She tends to slur her words, the chorea is definitely big with her Seth: Poor balance and coordination, a lot of twitching, people used to think she was just a drunk Morgan: Her emotions, she had really bad mood swings Emma: When I was really young she started off having tons and tons of behavioural problems Emma: She would just get in these rages, she would be in the car and be so angry and just flip out Emma: All angry all the time and then she would get really sad Interviewer: What do you find most difficult about HD? Johnna: Being the parent to your parent Whitney: Becoming a parent for my mum and a caregiver for my mum, that was really hard Michelle: How it wipes out families Morgan: Watching the progression Morgan: The easiest way when I explain to people how it’s affected me is that when it started getting bad it was like watching her drown Morgan: And, you’re watching from the beach and it’s like I can see you and I can almost get there… Morgan: But if I go out there it’s going to be an issue… you know, you are helpless, standing on the beach Morgan: There is just nothing you can do Interviewer: Have you provided care for your dad at any point? Zach and Megan: Whenever they go out I help a lot, I even help out when they are still home Zach and Megan: He gets him dinner… yeah, I get him dinner Zach and Megan: Sometimes I take him down the stairs, help him down the steps, push him in his wheelchair when he is struggling to go to the bathroom by himself Kaitlin: I continued to be her caregiver over time as her health declined Kaitlin: And it went from me just being around the house making sure that I could pick up things after her Kaitlin: To me trying to get her to take her medicine Jaime: My sister and I collaborate and take care of him on a daily basis Jaime: Pretty much full time, I had to kind of put my career on hold Interviewer: Is there anything that you used to do with your dad that you can’t do anymore because of HD? Zach and Megan: We used to go and cut down Christmas trees Zach and Megan: He used to come with us to a lot more places, like now he really doesn’t come out with us a lot Emma: Like everything! She doesn’t really want to go out at all any more. She just wants to stay home because of apathy and depression. Interviewer: How do you feel about being at risk? Ashley: It’s actually kind of scary because you don’t know if you are going to have it or not so you want to live your childhood to the fullest Laleh: I’m scared that I will get it and won’t be able to do a job that I really want to do. If I wanted to be a surgeon or something that’s not going to work. Emily: Being at risk is terrifying, it weighs on your mind every day of your life Emily: Having known about the disease since I was 10 or 11 years old you just develop it as part of your life, it’s a constant what if in the back of your mind all the time, Emily: It’s very overwhelming, I think is the right word Gabrielle and Sierra: You see changes in my dad and then you are like, wow, is that going to be me? Destiny: Is it really worth getting close to people if I could be taken away by this disease? Gavin: Being at risk makes me feel a little upset knowing it’s not curable Interviewer: Has HD affected your schooling at all? Emma: A little bit, when I was younger I would get so caught up in how often my mother was yelling at me and all the behaviour effects Emma: I couldn’t get my school work done and for the longest time I just wouldn’t do my home work because I wouldn’t have time because it was always mum, it affected my grades a lot for a long time Kaitlin: Elementary through High school I didn’t have very good grades, I probably made C’s, B’s and D’s Kaitlin: I was average, I wasn’t flunking, but I was really having a hard time, honestly I wasn’t learning a whole lot in school Kaitlin: I wasn’t paying attention, and I just thought that maybe I wasn’t that smart? I didn’t really have any big plans of me going to graduate school Kaitlin: And then I realised over time, I was really depressed when my mum was in the middle of her disease Kaitlin: The brain can’t cope with going to school and trying to make friends, trying to learn history and math when you are back at home trying to take care of a dying parent essentially Interviewer: Has HD impacted on you socially? Whitney: Yes, it has, I wouldn’t say that I’ve lost friends over it but I’ve certainly lost relationships Gabrielle and Sierra: It’s kind of hard sometimes to explain to your friends that you can’t go this place or that place Gabrielle and Sierra: Because I have to stay, even though my dad is there with my little sisters, I still have to be there to watch my sisters Destiny: I was stuck home, I would go to school, come home, take care of my mum from the time I got home until she went to bed and then repeat basically Destiny: And I was home every weekend taking care of her, so I never really got the opportunity to get out and do stuff Destiny: And even when I had the opportunity I was hesitant, because I was the one who took care of her most of the time Destiny: So I felt like if I left her I’d be abandoning her and didn’t know if someone else would take care of her while I was gone, it was really hard Interviewer: How does HD make you feel? Seth: A lot of different emotions, sometimes it makes me feel angry, frustrated, upset Kelly: It makes me feel mad because it’s just these innocent people are given this disease that makes them lose their mind and they are in a body that, they know what’s going on but, they can’t control it Johnna: Like I want to cry, cry really hard and make it go away, it sucks watching somebody you love so much and there’s literally nothing you can do Johnna: I mean there are some things you can do but you can’t just take it away, you can pray, but it just makes you feel horrible Kaitlin: It makes me feel a lot of grief, I feel so much pain over what my mum had to go through Kaitlin: I feel so much pain over how much I have lost, how much of my life I have missed because I have been dealing with this Interviewer: How do you feel when you meet other young people? Kelly: It makes me feel less alone because I know there are other people going through the same that I am Emily: Inspired, when we did the HDYO reps training, that was one of the coolest weekends I’ve had in a long time Emily: It was amazing to meet young people with energy Johnna: Relief, It’s kind of like, oh my gosh I’m home, somebody understands us, someone knows what I’m going through because you feel so alone Julie: It’s like a bubble here because we all can relate, but when you are at home with your friends, they will be there for you but it’s not necessarily that they know exactly what is going on Julie: It’s kind of just helping them feel comfortable and safe Jaime: It feels great to meet other people who are impacted by HD, it reminds you that you are not alone Jaime: And reminds you that other people are dealing with what you are dealing with and it can be done and I think there is great power in numbers Jaime: And so I think it is great for organisations like HDYO and the NYA to help us stick together Erika: I love meeting young people impacted by HD, I feel inspired, in one word, inspired Interviewer: Why do you think young people in HD families need support? Morgan: I think… because they end up being caregivers, they do Michelle: HD families with young people really need support because children growing up in these homes are so stressed Michelle: They become caregivers at early ages, they don’t have what you would consider a normal childhood in a sense where Michelle: They are having to tell their friends ‘Oh when you come over just ignore my dad lying on the couch, that is all he can do’ Savannah: They just need to be supported in their fight because not only do they have HD but they have regular teen stuff going on Savannah: And it can be so hard to deal with all those things going on at once so meeting people their age in similar circumstances is totally key Emily: Because they are just as affected as any other member of the family Emma: A lot of us, the great majority of people in HD families , we are all at risk and it is really hard to have that burden on your shoulders Emma: We can’t just fall apart too, we need to be healthy in ourselves even though our parents aren’t healthy Emma: We have to live our lives as well, that’s just really important for us, we need to be supported in that way to be able to live our lives We are immensely proud of and thankful to the incredibly brave young people who shared their experiences as part of this project These young people highlight the need for support. At HDYO, we are committed to supporting young people impacted by HD around the world If you want to learn more about HDYO and how you can help, visit hdyo.org and contact us. We’d like to thank the National Youth Alliance and the Huntington’s Disease Society of America for their support with this project And finally our supporters…