Hello My name is Erlend Ravnå 22 years, I am from Norway (Mosjøen) small town in the northern part of Norway.
since I was a kid I saw my grandmother have the disease. (she died around 50+)
During last years my mom is starting to get more sick for every year.
years ago while I was at the psychiatric.Because at that time I had the condition psychosis. At that place I also got tested for Huntington. It was just a week after my 18 birthday
My result was positive think it's CAG 22. 44. So that might mean I'll get it early, but I am still without any symptom.
Now 5 years later I am without any medication and feeling better than I had in my life.
I've been a part of HDYO and YAWG since my first EU summercamp.I was very happy to share part of my story in Norwegian association the year after. I've taken part in volunteer projects like hdyo rep, and hdyo news team..
I cope with Huntington from taking part in HD community. Not only have I learned about the disease, I have learned more. Best thing of it, I get to meet many amazing people.
I am trying to get a paid job, but it's not so easy. But I still work for kindergarden very close to my apartment. And have last 3-4 weeks I have been in Red cross as a volunteer. I think it's great :) I go there Friday in evening, and join every courses they have.
Wow, you're quite an amazing young person! You are involved in so many different organizations - good for you. How do you find it helps with coping with HD in your family? Connecting with other young people affected by HD is really great and helpful I find!
You seem to be in a good space mentally. I'm very happy for you! Keep up the positive attitude and outlook. We all need to have the same enthusiasm and positivity as you :)
Hi my name is Kirsty and im 12 years old, i live in the UK. my dad whose 55, has HD and he cant talk much anymore and its really sad seeing him struggle to eat and walk. he sometimes gets angry but not as much as he used to. im a young carer. i have a sister whose left home and at univercity and shes 19, shes at risk to but she hasnt tested yet. I think my grandad (my dads father) who died, had HD but i havent seen my grandma for two years because she lives far away. its nice to know there is other people in the same situation as me.
thanks for reading my story
Thank you for sharing your story, what a brave person you are. It sounds like you are doing a lot to help with your dad at home, is that right?
It is sad watching a loved one struggle to eat and walk, or not being able to talk clearly. Are you still able to do things together as a family?
If you ever need to talk I am always available, just email me at firstname.lastname@example.org
Hello, my name is Verena (*1994) and I am apologising in advance: this post is going to be long and somewhat heated up =)
I grew up in Germany with my family. My father is diagnosed and sickened with Huntington´s Disease after I was born and officially being out of job and taken care of by my mother since 2001. I have 3 siblings, whereas only my brother and I are the biological children of my father.
Since my mum was a nurse, she is really good at taking care of my father, but doing that whilst raising four children on her own is something nobody is capable of, I believe now. Given the situation with my parents and my 5 - 8 years older siblings having moved out to study, I decided to move to boarding school 500 km away from home - the best decision I ever made.
Geographical and emotional distance allowed me to actually recognise and locate my emotions, start to deal with mostly my fears and differences in perception of growing up under the shadow of HD. Comparing myself to my classmates and their growing-up, I see now that every family has its very own difficulties, ours had unfortunately a bit too many of those.
We did not need a “sit down” about HD, I knew and saw it. In my early teens I started to ask my mum questions and with her nurse background it felt like conversations about a patient - my dad - and the possible next patient - me. (I actually don´t know how it was for my brother, he does not like talking.) She always emphasised the development and research in science, cure and therapy, but it did not not help my issues.
In 2013 I moved to Amsterdam to study music. I have a really good relationship with my mother now, I owe her a lot and for me as the youngest I think I was provided with everything a child needs to grow-up. When I visit home I help my Dad with eating, going to sleep, walking stairs or general walking. Most times I can see through his mumbles and picturesque way of talking, if it is a happy, careless day or rather about psychotic fears - but it is not enough to kill the anger and frustration which grows deep within: Why was he so irresponsible and egoistic to have children, not even telling the partner that there is a risk??? Yes, I recognise the fear of loss and being alone forever and starting to die every upcoming year…so why making other people suffer with me? “A sorrow shared is a sorrow halved” - nice saying, but does not apply here, I rather define it as “HD shared is sorrow multiplied”.
My brother has 5 years more and an actual bond to “the person” in my father, I guess that is why it is for him not a question of wrong or right, egoistic or helpless what my father did (or better did not) do.
I remember every time my mum said “You know that your father will probably die in the coming 2 years?” (I hear that since 10 years now). I even wished for that moment to come; that he will die, take off our extra burden, let my mum, me and my siblings have a life without the future view withering in front of me, let me as youngest kid be the one who needs the most help, and so on. Afterwards I feel so guilty I cannot describe it properly in words. My biggest difficulties I have with my frustrations about the whole situation and at the same time empathy for my father always intertwined with anger and disappointment…
Thank you for reading, looking forward to some "shared sorrows" ;)
I am 31 and my grandad had HD, he was late onset and died at 74 from other causes, my uncle also had HD and died at 56. My dad was never tested and unfortunately passed away last year at 61 from a heart attack. He showed no symptoms on HD, had mild depression and a little anxiety caused by having problematic/bullying neighbours, he lived alone and think he was bored more than anything else. This leaves me in limo ...
I've known about HD being in the family for year, have done lots of reading about it and it has never bothered me. I'm a very positive person and would not let it effect how I lived my life. However, me and my husband now want to start a family and it's started to play on my mind. Not knowing my dads status has made me more confused, although I know it's positive that he got to 61 showing no symptoms there is always that possibility ...
Hello Clear & Bright,
Thank you for sharing your story with us. Sounds like a complicated situation that you have on your hands. It is great to see that you are considering your options. I have attached a link to an article on this topic on this website that can walk you through various scenerios -- http://en.hdyo.org/you/articles/45
Everyone is different and it can be difficult because some of the stigma surrounding HD. Do not worry you are not alone in navigating HD and starting a family, many of us struggle to figure out what is right for us! I hope this helps!
Thank you for sharing your sorrows. Sounds like HD has had a major impact in your family. I think that HD shared is understanding multiplied instead of sorrow multiplied. Everyone of us has a different story, some very similar to yours. Sharing is a great way to get all the negative emotions out and try to take the positive that comes with it.
Have you talked to your mother about how you are feeling? Science has come a long way and the testing for HD only started in 1993, which means that it is possible that he may not have known that he was at risk. I have attached a link to our living with HD in the family. It has some video clips and information that I feel you will be able to relate to - http://en.hdyo.org/you/articles/62
I hope that your shared sorrows can be changed to a shared understanding! Have you looked into a local HD chapter? You might be able to meet local carers who have experienced similar situations as well. Feel free to ask any questions that you have!
Good evening everyone !
My name is Cécile. I am a 22 year old french woman, living near Paris. I'm going to rant a little, I'm sorry !
HD has been ruining my family for seven years, now.
I can't really remember my mother from before the disease. I believe she was a strong; opiniated woman, she was smart and loved arts and literature. She was also a loving person, which is the only part that the disease hasn't changed.
It came as a surprise to all of us. I mean, my grandfather (whom I never met, he died before my birth) seemed to carry the gene, but nobody knew what he had, at the time. He ended his own life after becoming violent and threatening toward my grand mother, forcing her to move out with my mother and my aunt.
This disease is terrible. It's a plague. It's one of the worst thing I've ever witnessed. My mother is at a late stade, she can barely eat on her own, can't walk or talk properly. She can't do much on her own anymore, actually.
In a sick, twisted luck, fate has decided that - though it would steal my mother, it would spare my sister and I's lives. A last parting gift from our mom, I guess. We both decided to take the test. I guess we just couldn't live with a gigantic question mark over our head. We were both negative. I can't describe the relief I felt, knowing that my sister would be okay, that us both would be okay, and happy and have a chance to live a long fulfilling life. I would have taken care of her, though, I love her too much to live her on her own to fight the disease.
My mother and I didn't get on well. I still love her, though. But sometimes (often), I can't help but hope that she will die, soon. But then, I see her, looking like a small child when she sleeps, or smiling like mad because I brought her a small gift, and I feel guilty for feeling that way. Her disease is such a burden. And it is a curse, I wouldn't wish it on my worst enemy, so why did she have to be sick ? She was an honest woman, she liked helping other people, had made it her job, she was really beautiful. Now, she can't talk, can't walk, she can't even go to the toilets on her own. She would hate what the disease has made her, she would rather be dead than live how she is living today, had she been fully conscious. But how can I disparage the person she is today, in favor of the person she once was ? How can I put a value on life, and on how it ought to be lived ? So many questions, and so much guilt for thinking the way I do;
In a way, I have more luck than most. But it still provoked rifts in my close family. It's still killing my grand mother, who, as a 75 year old lady, is caring for a 50 year-old woman every single hour of every day with no help whatsoever. It's so hard to find someone you can trust with a loved one. So hard to see the disease continue making its way in my mother's brain, leaving her weaker and more dependent each time. And to see my family broken appart.
Arf. Sorry. I talked too much, I guess I've just never met people in a similar situation.
Welcome to HDYO! Thank you for sharing about your family and your history with HD.
Many of us have been through similar situations with being a young carer and going through the testing process. You are very brave for facing it head on! It is difficult to watch a loved one degrade and I struggle with watching my father.
Have you considered looking for a local chapter of people impacted by HD? Please know that you are not alone on this journey!
Hello everyone! I´m Cinthiya, 22 - from Norway. This summer i attended HDYO´s Eurocamp in England. After meeting so many great people and sharing my story, i got suggested to write a blogpost. Im not a blog person, so i decided to write it here. I´ll try to keep it short and informative :)
My dad got diagnosed with HD in 2007, at that time i was around 13/14. Everything started to become very difficult in our family. In the earlier stage of the disease, my dad used to be very aggressive and stubborn. Things started to change, and me and my brothers had a very difficult time. (i have an elder & a younger brother).
We have had long periods with sleepless nights with my dad being aggressive & ´´naughty´´, he would break things, make noises, shout etc. . All this started to affect me a lot, especially at school. I couldn´t consentrate in school,and lost my interest in almost everything.
As my dad changed bit by bit, and we felt it hard to look after him by ourself, and we could obviously not let him alone without anyone around him when we head out. We decided to get some help. My mom used to work, and she was scared to leave my dad alone with us. So we got some home nurses who came twice a day to help/look after him. These nurses were not trained to look after a Huntington patient, which lead to many different problems. It can be a endless list if i start to write everything.
My dad used to be so stubborn, that he would freak out if someone did anything wrong. He had his own routine and tiny details which HAD to be PERFECT, if not- he would explode. This was really hard when we had different nurses for each day, and some of them were new, so they would never know what they might face if they did things wrongly. And many of them never held my dad properly while he was walking, so because of his bad balance, he would always fall and hit himself, sometime really badly.
All this lead to that me/brothers had to be at home while mom was at work, making sure that everything happened rightly so there wasn´t any ´´explosions´´. Personally, i hated having unknown people walking around in our house, so i started to be in my room the whole day after school. I started to get depressed, i slowly cut going to school, lost interest in things i used to do with love! everything just changed.
After 4 hard years with help/support, my mom decided to quit her job, and be a fulltime carer for my dad. Things became easier for him and us. We have never wanted to put my dad into a carehome, so we have got every single things he needs to stay with us as long as possible!
(chair, bed, wheelchairs, showerchair, handles on the walls, stairlift etc. )
When i think about everything, there are so many things to write! this is just one part of everything.
It has been almost 10years since my dad got diagnosed, and it has been a very long roller coaster ride for me and my family.
Things have started to be a bit easier, my dad is not so aggressive as he used to be. But there are some situations/ periods with bad times. We are all getting used to it now, as we have gone through so much!
Im feeling better after some good help, and i´m studying at the moment. Fingers crossed for the future!
Just saw that there was a reply on my post. Thank you for replying! :)
And yes, you are right, there is much more to tell.
Im very happy that i could meet so many awesome people at camp, and i´m still in contact with many of them, which i´m so thankful and happy for! :)
I´m studying to be a teacher. At the moment i´m in my second year. And im doing a subject which is about special education. I chose this subject, as i like to help children with special needs and need help with their education. I still have one year left, and hoping that i will keep myself steady and strong so i can complete my studies! :))
My name is Darcy. I am 32 years old and I just tested positive for the HD yesterday. My father is 55 years old and tested positive a few months ago. My father is my best friend and it saddens me to watch him become more depressed after being diagnosed. My father shows chorea movements also, but other than that he is a healthy working man. Now that I have tested positive he blames himself. I chose to get tested so soon to set an example for my three siblings. It's ok to be afraid, but I do believe that knowledge is power. I am ok with testing positive because I feel like I was meant to be the positive soul that my Dad needs. To show him that this Disease will not define us. I want him to see that it's ok to be afraid, but to channel all of the worries into raising awareness and being hopeful. Sometimes it's hard being strong and positive for the whole family, but I know now that that is my purpose. I also believe that if you have a positive attitude that it is infectious and it will rub off on others and give them hope.
Thank you all for sharing your stories and I am happy that I was able to hear about this group by a man at my Huntington's support group I go to.
Family is everything and that is exactly what the HD community is and I am forever grateful for you all ;)
Welcome to the forum! I’m really glad someone referred you to the website. You’ll find some great resources here and a lot of support from people going through very similar situations as you. How did you find preparing for the test with such short notice? Are you seeking support from counsellors or anyone? Your siblings, and you dad, definitely have someone to look up to! It’s really important to stay positive. This is the only life we get, right? You may find meditation a useful tool to help you stay present and positive. Try the “headspace’ app/website. It’s awesome! How’s your dad doing? Once again, I’m glad you are reaching out :)