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28 июля 2020

Huntington's Disease Youth Organization

На сайте HDYO имеется еше больше информации о БГ для молодых людей, родителей и специалистов:


This section is going to look at how bullying can impact on young people in HD families. Bullying is a behaviour which is intended to hurt someone either emotionally or physically and is often aimed at certain people because of their race, religion, gender or sexual orientation or any other aspect such as appearance or disability. It can happen in many forms and places. In this case, we are exploring when bullying happens because you have HD in your family.

The impact of bullying


Whatever type of bullying you are receiving, whether it be physical, name calling, social or cyber bullying, they can all significantly impact on your emotional wellbeing. Bullying is really challenging for anyone to experience, especially young people. It is also completely unacceptable behaviour, not your fault and should be tackled as soon as possible.

Coping with bullying

When you have someone in your family with HD and this person becomes the reason for you experiencing bullying from school, work or anywhere, it is incredibly emotional to go through. HD is enough to deal with in a young person’s life without bullying added on there too.

‘I was bullied at school because the kids saw my dad had movements and joked about this every day. It made me feel depressed and angry about my life.’ – Young adult

Bullying can make your life complicated when you are in a family with HD. You can find yourself in a situation where you’re trying to deal with HD impacting on your family/life and, because of HD, experiencing bullying from those around you. A key thing to say here is that none of this is your fault and not to blame yourself for the bullying.

Being in denial

Bullying can impact on your confidence and how you feel about yourself and your family.

‘I began to hate my dad for having HD because I was getting bullied at school. Looking back I was in denial about HD in general and wanted it to go away so my problems would also go away – Young adult

You can see in the quote how the young person is angry about being put into this position, but is expressing that anger at his dad for having HD. Here we can see a young person struggling to cope with HD but also the bullying they are receiving – looking for a way through this. They also mention they felt they were in denial about HD and just wanted everything to ‘go away’ which is totally understandable. But in order to better cope with HD you have to do two things: accept HD and be educated about what HD is. Being in denial means you’re not allowing time for you to accept HD in your life and be comfortable with it. If you can become comfortable with HD and get out of that denial phase then mentally you will be a much better place to cope with the bullying you’re receiving.

Getting help with bullying

Let’s start this part by saying you do not need to go though this experience alone. To get your bullying addressed there are 3 steps you should think about:

  1. Who to communicate with
  2. How to communicate
  3. The plan of action

Who to communicate with

In terms of who to communicate with you need to explain what is happening to you to somebody you trust. This may be your family, friends, teacher(s)/work bosses, counsellors/therapists, or us at HDYO to seek the support you need. Think carefully about who this might be as they need to be a trustworthy person for you. Some schools have counsellors on site or you may already speak with a therapist. But finding 1 person to tell initially is the first step.

How to communicate

You may want to think about how best you can communicate. You might be happy to talk about this with someone you trust, in which case great, but you might not feel comfortable doing that so perhaps writing an email or a letter would be easier for you to get your voice heard initially.

The Plan of Action


Now you have who to communicate and how, you can start to work out your plan together of how to make sure you get the help to tackle the bullying you need and deserve. This will likely involve speaking with the school, maybe having the classes or bullies educated about HD and the harm they are causing you, working on steps to ensure that you have options if the bullying doesn’t stop at this point. What will the school do if it continues? These are all things to talk about and create the plan of how to get past the bullying. HDYO can certainly help in a lot of the creating a plan part too.


Bullying is a sensitive issue and we can not stress enough once again you don’t need to go through this alone. There are people who are here to help you in your family, friends, teachers and at HDYO who will take the time to listen and understand what you’re going through and ultimately work together to make sure this is tackled. Please, message us if you are experiencing bullying because of HD.

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Дети Тинейджеры Молодые люди Родители и семья Ювенильная форма болезни Гентингтона Friends Профессионалы