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Ask question 2Ask a question for young adultsY

Welcome to the young adults area in the ‘ask a question’ section. Do you have any questions about Huntington’s disease that you’ve always wondered about? Well here’s your chance because HDYO has gathered a panel of Huntington’s disease experts to answer any questions you may have.

Feel free to send any questions you have using the form below and we will forward it to who we feel is the appropriate expert to answer your question. You are asked to provide a name, age, country and email address. We would appreciate it if you gave your correct age, location and email address. However, you do not need to give your real name if you don’t want to. Only the name, age and location you provided will be shown on this page, your email will remain private.

We try to answer all questions as quickly as possible. Once a question has been answered it will be available to view in this section and - if you provided an email address - we will forward the answer to your email address.

If you aren’t a young adult, please be aware that this area is for questions from young adults that may not be appropriate for your age range.

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Is it possible I was tested for HD in the womb?Y

Is it possible I was tested for HD in the womb?

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If my aunts and uncle had HD could I have it?Y

if my aunts and my uncle on my mothers side had HD does that mean i have a chance of having HD?

Cameron, Young Adult USA

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If my mother had HD but I don't can my baby get it?Y

If my mother had HD but I don’t have it, could I give it to my baby? Do you still carry the gene even if you don’t develop the disease?


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I'm an identical twin and my brother won't get testedY

I’m an identical twin, and my brother and I are at risk for HD. Our father had it. I want to be tested, but my brother refuses. What do I do?

Levi, Young Adult, USA

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My family seems to develop HD later, if I test positive will I?Y

My great nan had huntingtons disease (did not pass away until early 80’s) my nan currently has it and my my mum currently has it. I have not had the test. My nan is 67 and still lives alone with a little help from my mum but copes day to day still. My mum is 50 and although I am starting to see behavioural changes she too is doing very well. As my line of family seem to develop the disease a lot later does this mean if I tested positive I would be more likely to develop the disease at a later age?

Charlotte, Young Adult, UK

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How predictive is age of onset from previous generations?Y

My boyfriend is positive for the HD gene. His grandmother was diagnosed in her 70’s. His mother is also positive for the gene. She is 60 and showing no symptoms yet with a count of 40. How predictive is age of onset from previous generations? Does this mean he may not present until later in life since that seems to be the trend in his family history?

Melissa, Young Adult, USA

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My dad has 27 CAG repeats, what are my chances?Y

My dad got his results back to and got the all clear but he scored 27 on the test what is the chance I will get it

Ashley, Young Adult, UK

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Possible postive and negatives of getting tested?Y

My mother and grand mother have Huntington disease. I’m really wondering what the possible positive and negative effects may be if I get tested. Thanks

Scott, Young adult, Canada

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Can kids be tested?Y

My father was diagnosed with a count of 38 and I also have the same count. Dad is now 75 and not really showing any signs I have since had 2 girls who are aged 5 and 6. My wife is now very worried for our daughters. Can kids be tested? Or is this up to each individual once they are 18?

Jason, Adult, Australia

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Will I get earlier onset than my dad?Y

My dad was recently diagnosed with late onset hd. He is pre-symptomatic and 60. I am aware that the disease often gets worse passed from father to children. Is there any data regarding how often anticipation occurs? Would a longer cag repeat length than his tell me whether I would be earlier onset than him? Thanks!

Julianna, Young Adult, USA

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Will my brother get symptoms at the same age as my parents?Y

My grandma,aunt and father have HD I’ve been tested and I don’t have it….my brother chooses not to be tested for his own reasons he is 27 years old. …. my dad showed signs at 35 same as my aunt and grandma.. I was wondering if my brother does have it, will he start showing symptoms at the same time as my other family members or does each person show at different times?


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Can you be a carrier without any symptoms?Y

Is it possible to carry the HD gene but never show any symptoms?

Lewis, Young Adult, Australia

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I have HD and am pregnant, will the baby get it?Y

If I’m pregnant and I have huntingtons and the father does not will the baby have huntingtons?

Anonymous, Young Adult

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My mom got HD without anyone in her family having itY

No one in my family had HD, but some how my mom got it. Is there any way to developer this disease without it being passed down?

Jasmine, Young Adult, USA

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Mum's CAG repeat is 30 - how are her children affected?Y

Hello! My aunt passed from huntington’s several years ago even though it appeared that neither grandparent (gma passed at 75 and gpa passed at 86 of natural causes and heart disease) had it….


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What percentage of people fall into the gray area?Y

What percentage of people tested fall into the ‘gray area?'  either with reduced penetrance or intermediate?  Is it very common?  Thank you?

Sarah, Young adult

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Can paranoia be the first symptom of HD?Y

Hello. My husbands father has HD, and my husband does not want to be tested. He is now approaching the age of 40 and have no visible symptoms. However, I think he is showing some paranoia or at least extremely careful behavior concerning electronic devices and fear of being watched somehow….

Anonymous, Young Adult

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Do gene silencing treatments look promising?Y

My friend (30) recently found out that he carries the mutated gene, so I have been trying to do some research about potential treatment possibilities and how the future looks.. Do gene silencing treatments look promising (as of 2016)?…

Preben, Young Adult, Denmark

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If neither of my parents have HD can I get it?Y

Hello, I was wondering if neither of my parents nor grand parents had Huntington’s disease is it possible for me to have it?

Rodney, Young Adult, USA

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My grandma and dad had HD, do I?Y

My grandma had hd and was bed ridden and passed at 50 i believe.she had 4 kids my dad (56)bed ridden and my aunt (40) deceased got hd my aunt had 2kids one has hd one doesnt ….

Robert, Young Adult, USA

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Is it almost 100% that my friend or her brother will have HD?Y

One of my friends dad just recently died from Huntingtons disease. My friends mom was not infected but her dad obviously was. Her parents had two children, is it almost possible that her brother or my friend will 100% chance have the disease?

Shelia, Young Adult, USA

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What does a positive allele for HD mean?Y

My mom has paper work that she showed a + allele for huntingtons. What does this mean?

Leanne, Young Adult, USA

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Can you have the mutant gene but not get HD?Y

Is it possible to carry the mutant gene and not to suffer from the disease?

Jose, Young Adult, Colombia

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My great-aunt has HD, am I at risk?Y

My great-aunt has Huntington’s Disease, I know each case is different but it seems like my grandmother is starting to show the same symptoms, she is showing a grand memory loss over the years, am I at risk of carrying this gene?? Thank you for having this space for questions.

Felipe, Young Adult, Brazil

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What age is it safe to say you don't have HD?Y

My mother refuses to get tested for HD because she’s afraid. She is now in her 50’s and shes fine, by what age is it a safe age to say that she doesn’t have it?

Stacey, Young Adult, USA

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Can a child have HD if their parents are over 50 without symptomsY

Hi there i wanted to know, since HD is a autosomal dominant gene. Can one (an offspring) have it without parents having any symptoms they have HD when they are both well into their 50’s?

Michelle, Young Adult, USA

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Do both parents have to be carriers to pass it on?Y

Do both parents have to be carriers of Huntington’s disease to pass it on to a future child?

Anonymous, Young Adult

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I have 42 repeats, my dad had 40 - what does that mean?Y

Hello I have not long found out that my father has inherited hd from my grandmother, my father is now 50 and he’s repeat on the scale is 40. Once I found this out I got myself tested and it came back positive my score on the scale was 42. So does this mean I will get symptoms earlier and maybe more severe than what he has? I do not really understand the scale side of things….

Tanya, Young Adult, UK

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My grandad got HD in his 50s - could my mum and I have it?Y

Hi. My grandad died of HD in his 50’s. He and my grandmother had 5 children. 2 of their sons (my uncles) developed the disease in their late 20’s and died, and one of their daughters (my auntie) developed it in her 30’s and has also passed away. My mum is now 64 and symptom free. What are the chances that she is a carrier and could develop late-onset Huntington’s? And if she is a carrier and has passed on the faulty gene to me, would it also be a late-onset form of the disease, or is the CAG count random and in no way liked to the family history? Thank you in advance.

Laura, Young Adult, France

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Can HD be similar to autism?Y

Hello! Do you know whether early or prodromal HD can manifest as similar to autism? I have the HD gene and have been diagnosed with autism and my psychiatrist thought that might be the case and is in the process of referring me to a neuro psychiatrist to try to find out. I was wondering. Thanks for your help.

Brandy, Young Adult, UK

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My aunt has HD, is there I chance I do?Y

Hi! I have an aunt who was diagnosed with HD a couple of years back. Neither my grandmother, my grandfather (both over 75 y/o) or my mother (55 y/o) are showing any symptoms and as far as any of us know, there haven’t been any other known cases in my family. Could my aunt still have inherited it from my grandparents, and is there still a chance I’m at risk of developing HD?

Mirjam, Young Adult, Norway

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My dad only got symptoms at 50, will I get them late as well?Y

My dad starting showing hd symptoms at 50. I carry the gene does this mean I won’t get it until later in my life as well or can I show symptoms young even though his were older?

Mary, Young Adult, Australia

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My mother did not have the gene, can I?Y

My grandmother died of H.D my mother was tested and did not have the gene. Can I or my daughter still have the defective gene?

Alison, Young Adult, UK

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My grandmother's brothers have HD, will I?Y

4 of my grandma’s brothers are HD affected. She is showing up to now only major depression symptoms. are high the chances my father and I will be affected by HD?

Madalica, Young Adult, Italy

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My aunt has HD, could I have it?Y

One of my aunts is suffering from HD, she is the sister of my mum. My mum is already 50 years old and I wonder if I could had inherited?

Carlos, Young Adult

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My grandma had HD, my father doesn't, can I?Y

My grandma had hd and had 3 boys 2 of which are and were hd my father does not have hd can me or my children have hd

Carrie, Adult, USA

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My dad has HD. What are the odds I will?Y

My dad has hd. My older sister and brother have signs of it. Me and my other older sister don’t not yet anyway. I look and act exactly like my mom. I’m very organized and have s good memory what are the odds I will have it?

Caitlin, Young Adult, USA

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My auntie had HD but my father doesn't could i have it?Y

My auntie had HD but my father doesn’t could i have it?

John, Young Adult, UK

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My father doesn't believe HD is in the familyY

My father completely rejects the identification of the HD gene (for which he has been tested twice in 2 different labs) and the diagnosis of onset. For the last 6 years, every attempt we and the doctors have made to convince him has failed. I don’t think he is in denial but that he lacks insight. He genuinely believes that the doctors have withdrawn their conclusions, which is a lie. When asked “What would it take for him to believe that HD is in the family?” His reply is “Nothing”. Do you have any advice on how we can help him to stop believing a lie and see the truth? Because until he accepts it, we or the doctors cannot help him.

Tim, Young Adult, UK

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What is Huntington’s disease?Y

What is Huntington’s disease?

Mahendra, Young Adult, Nepal

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HD passes from father to daughters in my family?Y

Hi, I have a question about HD transmission, my grandmother has the disease. In our family, my grandmother’s father had the disease and he had 1 son and 5 daughters, the man didn’t got the disease, but the 5 daughters had, this means that the disease passes from the father to the children that are women and from the mother to the children that are men?

Wellington, Young Adult, Brazil

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Is it possible to get tested with no symptoms?Y

My dad was diagnosed with Huntingtons disease at 29 years old, he’s now 47 and refusing to eat or drink, he just stares into thin air and can barely talk :( it’s so heartbreaking and I’d like to know if it’s possible to get tested even though I have shown no symptoms as my dad was diagnosed young

Monica, Young Adult, N. Ireland

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If a mother has the gene is the son's chance 50-50?Y

Hello there.. Love this site, very informative but I have friend actually who asked if I could do research for her on this diseases because he may have a chance of having it. So my question is if his (my friend’s) mother has the gene and shows signs of the disease but the father does not carry the gene will my friend have a 50-50 chance of having it or is it more or less likely that his sister carries it? Can he carry the gene but never show symptoms?

Heather, Young Adult, USA

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I'm 31, fit and healthy - am I still at risk?Y

Hi, my mother, grandmother and uncles had HD. I’m 31 years old now, I’m very healthy and active, both physically and intellectually. I would like to know if I’m still at risk for HD? I have two children, one is 5 years old and the other is 3 months old. If I don’t have the gene mutation, they will not have it either? Two years ago I did several exams, I did a brain scan, and it didn’t find any lesion. Can I be at ease with this?

Pamela, Young Adult, Brazil

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Is there feedback from the gene silencing trial?Y

Hi I have recently tested gene positive I was wondering if there any feedback from the gene silencing trials trying to remain hopeful

Sheree, Young Adult, Australia

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What is the average age for symptoms to show? Is there a cure?Y

My grandad died of huntingtons disease about 4 years ago, my mother today i’m unaware if she has it but i know she hasn’t and doesn’t want to be tested but before i’ve heard her mention things before which makes me think she might have it starting, i know her sister has it and it makes me wonder if i have it and what is the average age for the disease to start really showing symptoms and is there a cure for it yet?

Holly, Young Adult, UK

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Is it possible no children will inherit HD?Y

My mother is 55 years old and has HD from the last 16 years, we are three siblings, I am aware that every child has a 50:50 chance of inheriting this disease but have you ever came across a family where not even one child inherited it?

Ayesha, Young Adult, Pakistan

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My mom has stopped eating, what should I do?Y

My mom has Huntington since 15 years, she is completely bed ridden, since few days she has stopped eating anything, what should i do?

Khadija, Young Adult, Pakistan

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Can a 2 month old baby have HD?Y

Is it known for a 2 month old baby to have HD?

Ronda, Young Adult, USA

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How can we help my mum have a good sleep overnight?Y

Hello, my mum has been suffering from Huntington’s chorea for six years and she’s just started to have serious sleeping problems – she gets up every 10 minutes at night to go toilet (even though she doesn’t really need to…). She takes medicines daily Haloperidol… What can we do to help her having a good sleep overnight?

Katarzyna, Young Adult, Poland

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If my uncle has HD and my mother doesn't can I get it?Y

If my uncle has huntingtons disease and my mother doesn’t…can she still be a carrier and pass it on to me??

Kellie, Young Adult, USA

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Does age at conception affect passing on the gene?Y

My grandfather had HD and my father, who is in hos mid 40’s is showing signs of it. I was conceived when my father was only 16 years old. Does his age at conception affect the possibility that I may or may not have the HD gene?

Natalia, Young Adult, USA

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My grandparents didn't get HD but their children didY

3 out four children of my grandparents developed Huntington disease, but neither of them had shown any symptoms. I was wondering Since Huntington is dominant allele genetic disorder, how my aunts and uncle developed it from both healthy parents?

Pelareh, Young Adult, Canada

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How aware are people on sedatives?Y

Good morning, I actually have few questions… My mum is 65-year-old and was just diagnosed with HD… Quite late… Mum is still able to walk and take care of herself. She takes some medicines. Does a person taking some sedatives/tranquilizers haloperidol understand they are suffering from HD? Are they aware of what is happening/going on around them?…

Kinga, Young Adult, Poland

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Are outbursts common even before diagnosis?Y

My mother in law was diagnosed 2 years ago and I’ve known her for 7 years and knew there was a problem but no one was sure. She was the kindest most generous women but she would have these raging outbursts that didn’t make sense. Is that common for huntingtons even before diagnosis?…

Jolene, Young Adult, USA

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Is care free for people with HD?Y

Is care free for people with Huntington’s disease?

Anonymous, Young Adult

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Does HD cause people to sleep a lot?Y

Does Huntington’s cause the person to sleep a lot?

Carol, Young Adult, USA

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Can I have my adopted son tested for HD?Y

My son is adopted and his grandmother and great have it can I have him tested without their consent?

Anonymous, Young Adult

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Should my fiance be tested even though it only seems to affect women in his family?Y

Q. My fiance’s mother had HD and passed away about 9 years ago… If he were to test positive can he pass it on to our children?

Meagan, Young Adult, USA

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Is there a grey area in prenatal CVS testing?Y

Q. With prenatal CVS testing - is there a CAG count of the foetus where you DON’T have to terminate (eg between 36-39 the ‘grey area’ or 27-35)?

Sonnie, Young Adult, Australia

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What is the relationship between repetitions and onset age?Y

Q. My dad has 42 repetitions. What is the probability that the repetition increases if I have the HD gene?

Karla, Young Adult, USA

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Will I have more repeats than my mother?Y

Q. My mother has HD and her genetic test shows 40 repeats. If I’ll have the condition, can I have more repeats than she has or will it be the same?

Fernanda, Young Adult, Brazil

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My 3 year old son's father has HD, is he at risk?Y

Q. I have a 3 year old son and have just found out that his father has been diagnosed with HD. His mother passed away 2 years ago, she also had HD and one of his sisters has it also and was diagnosed some years ago. I would like to know if my son is at risk of developing HD, and if I can have him tested to see if he does carry the gene? Thank you

Stacey, Young Adult, UK

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Has HD stopped in my family?Y

Q. My fathers mother died from huntingtons, his youngest brother, and his sister both passed from it. He is in his 60’s now no signs of it. Does that mean the disease stopped or can it skip to me his daughter or his two other sons?

Amber, Young Adult, USA

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What if both parents have the expanded gene?Y

Q. What if both parents have the expanded gene for Huntington’s disease?

Patrick, Young Adult, USA

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Is gene silencing aiming to be a cure for HD?Y

Q. I have been following the HD ‘gene silencing’ or ‘lowering’ clinical trials this year but does this represent a genuine ‘cure’ or does it, at best, represent a delay - if its the latter how many years would it delay the onset of HD?

Ashok, Young Adult, UK

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Is there a cure? Is it hereditary?Y

Q. Is there a cure for this disease? Is it hereditary?

Gaston, Young Adult, Spain

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My grandpa had HD but my dad does not, am I at risk?Y

Q. My grandpa had HD but my dad does not have it, am at at risk of getting HD.

Kyler, Young Adult, USA

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My father was diagnosed but has no family historyY

Q. My father was diagnosed about a couple of years ago, my father is 59 and the normal age for symptoms starts around 30-40 years old. No one in his family had Huntington’s. So my question is how could he possibly be diagnosed with HD if it is a genetic disease but yet no one in his family tree ever had it or ever had signs of it?

Stephanie, Young Adult, USA

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My dad's aunt died of HD, could I get it?Y

Q. My dads aunt died of HD. None of his other aunts or uncles got it. Neither him or his siblings got it. Could I get it?

Mike, Young Adult, USA

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My grandmother had HD, could my son have it?Y

Q. My grandmother died from huntingtons, i am wondering could i have it or could my kids have it ? my son started getting ticks and eye blinking at about 7 he is now 17 and has many ticks and makes noises im worried he has it.

Crystal, Young Adult, USA

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Do I have to wait until I get signs to test?Y

Q. My grandfather, aunt, uncle, father and sister all have tested positive, or show major signs of it, I’m not worried about the percentage rate, or the chances that I have it, I just would like to know, being 24, would I be able to get tested just to see if I have it, or do I have to wait till signs are present? What type of doctor should I be looking for to do the tests? Thank you

Albert, Young Adult, USA

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Is it possible to find out if someone has the gene after they died?Y

Q. My brother has received a positive gene result that he has HD. My mom is 68 years old and my dad died when he was 56 but not from any disease. I wonder if it is possible to find out after a person’s death if he or she was a gene carrier?

Annethe, Adult, Sweden

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What exactly does the HTT gene do?Y

Q. What exactly does the HTT gene do? …

Nancie, Young Adult, USA

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Since my dad won't get tested is there any way I can?Y

Q. My grandma inherited HD from her mother and she recently passed from it. My grandma has 4 children, 1 of which has been tested positive but the others do not want to know. My question is since my dad won’t get tested is there anyway I can still be tested? I have a family of my own to worry about and I don’t see how it’s fair to me and my girls not to know where my life may or may not take me with this horrible disease.

Cindy, Young Adult, USA

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Do non-identical twins have 50% each chance of getting HD?Y

Q. My partner’s mother has HD as she inherited from her mother. My partner has a twin brother (dizygotic). Do they still have 50% each for inheriting HD?

Mel, Young Adult, Greece

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If my boyfriend doesn't have HD could our baby?Y

Q. My boyfriend and I just had a baby. His grandmother has HD and his dad also. My boyfriend has not been tested and we do not know if he has it. My question is, if my boyfriend doesn’t have it, is there still a possibility that our baby could have it?

Heather, Young Adult, USA

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Why do people with huntington's disease get so mad so easily?Y

Q. Why do people with huntington’s disease get so mad so easily?

Kylee, Young Adult, USA

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Can you modify the gene to have a baby without HD?Y

Q. Hi, my mother-in-law has HD, is 60, her late father too, my husband had symptoms and is in his 30’s. We decided not to have a baby for this reason. Now someone told my husband is possible kind of “modify the gene” in the embryo/fetus to have a baby without HD, but this procedure is very expensive and not so common….is it true???

BA, Young Adult, USA

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What do the researchers know exactly about CAG 36?Y

Q. I’m really interested in scientific data about inheriting Huntington’s disease from mother who has 36 CAG repeats (father without the mutation). What do the researchers know exactly about CAG 36?

Ewa, Young Adult, Denmark

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With two children will at least one of them get HD?Y

Q. Theres a mother that has HD. She has 2 children, both male. Is it possible that both of them doesnt get HD and can live with there lives? Or one of them is going to get it?

Stephy, Young Adult, Puerto Rico

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My father died at 56 without signs, could I have HD?Y

Q. My father’s family have developed HD by the time they were in their thirties; however, my father died at 56 due to an accident and, until then, he never showed signs of this disease, so we believe that he didn’t inherited it. Do my brothers and I have the chance of having inherited it?

Natalia, Young Adult, Brazil

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Do identical twins have the same HD status?Y

Q. If the genetic testing for Huntington’s Disease of an identical sibling is positive does it mean that the other has it as well automatically because they have the same genes? Or does the other also have a 50:50 chance?

Susanne, Young Adult, Germany

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Can kids be tested if their mom doesn't want itY

Q. My sister was diagnosed with HD, another sister is showing symptoms but has withdrawn herself from the family… The kids are now having kids of their own and our family is struggling. Have you heard of this before and is there any way around it?

Tina, Young Adult, USA

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I have HD, will my children have HD?Y

Q. Hi..my mother is HD. I am also diagnosed. I know I have got this from my mother. My worry is that will my children also have the HD. I am planning to start my family in couple of years. Thank you

Aryan, young adult, India

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Family history, onset and symptomsY

Q. My grandma had HD and I’m not sure when she got symptoms but probably around her 60s… Is it realistic to think that, if I have the disease, it will be similar in terms of age of onset and severity as my family?

Michelle, young adult, USA

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My dad, aunt and uncle have HD, will I?Y

Q. My grandma passed away from HD and my dad, aunt and uncle all have it. What are my chances?

Cori, Young Adult, USA

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Is HD gene on the X chromosome?Y

Q. Father inherited HD from his mother. Therefore, will everyone of his female offspring inherit the HD gene due to the ‘X’ chromosome contributed by the father, making probability 100% vs. 50%?

MJ, Young Adult, USA

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What happens in cognitive testing?Y

Q. What do they do for cognitive testing they said my appointment was going to be about 4 hours im nervous but really want to know of i inherited the gene from my father.

Alex, Young Adult, USA

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What is the physical test for HD?Y

Q. I would like to know how is made the physical test that is done in the clinic to know if you have HD?

Patricia, young adult, Brazil

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Could my symptoms be HD?Y

Q. My great grandmother died of a severe neurological disease in the 1940s. She would have been around 50 at the time of her death. My grandfather never spoke much about his mother or what illness she had except to say that he had to provide for the two of them while in school. Medical records have been long since destroyed and he died fairly young of cancer, himself. My parents generation doesn’t show any signs of HD…

Is it worth being tested to rule out HD, or is it too unlikely to be the cause of my problems?

Jake, Young Adult, USA

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Who does testing on children in California?Y

Q. I live in California.. I would like to know who does testing on a young child of the age of 12 months. We are adopting my little niece but we just found out that her maternal mother had huntington’s disease. So we like to do the genetic testing just to plan the future.

Anabell, US, Young Adult

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Does having a low gene count decrease the chances of HD?Y

Q. Does having a low-Huntington gene count decrease the likelihood a child will develop HD?

Laura, Young Adult, USA

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What can I do to help in Brazil?Y

Q. My mother died at 51 with HD. My grandfather also had the disease, and my uncle has it too. I’m 29, I’ve married 6 months ago. I’ve never thought about doing the test and I intend to get pregnant through artificial insemination. However, lately, I’ve been thinking about this everyday. One of my relatives has done a surgery and had a pacemaker implanted to control the involuntary movements. I’ve never read anything about that. What do you know about this surgery? And I would also like to make myself available to help in some way.

Natalia, Young Adult, Brazil

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Can you have IVF without testing yourself for HD?Y

Q. So my partner has a 50/50 chance of having hd.. his dad and auntie have tested positive for it. however he is against having the test yet wants to start a family in the next couple of years. I dont want to start a family knowing there may be a chance my child might obtain the disease. Is there any way of making sure the child doesn’t have the gene like gentic testing or ivf? if there was we would still end up finding out if he has it

Katie, young adult, UK

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Can 2 brothers get infected at a wide age gap?Y

Q. If my uncles got HD at the age of 25-30 and my dad is 50 years old and didn’t have any symptoms so far - does it mean that he don’t have the gene at all?

Eliel, 25, Israel

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My non-identical twin has HD, what are my chances?Y

Q. I’m a dizygotic twin, I’m 27, and my brother has Huntington’s Disease (it started around the age of 18). In this situation, am I still at a 50% risk condition of having the gene or, because I’m a dizygotic twin, I have a lower or even null risk of HD?

Bruno, Young Adult, Brazil

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My grandfather had HD, what are my chances of having it?Y

Q. My grandfather had Huntington’s..I’ve also had 2 aunts pass away with with.. now have 3 cousins diagnosed with HD. My dad hasn’t been tested and as far as I can tell doesn’t show signs. What are my chances of having HD?

Lisa, young adult, USA

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Will my CAG repeat change?Y

Q. Will my CAG repeat change or stay the same?

Jessica, Young Adult, USA

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I haven't developed JHD, has my risk of HD fallen?Y

Q. If my father has HD but I have not developed JHD does that mean that the chances of me developing HD falls slightly? If so, what percentage? Thank you

Ashok, Young Adult, UK

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PGD in ItalyY

Q. Is it possible to perform PGD in Italy? Which the requirements and eventual facilities?

MG, 26, Italy

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My memory is not as good as I was, should I test for HD?Y

Q. I used to be able to retain a lot. Now as I’m growing into adulthood I’m noticing that those abilities are decreasing dramatically. Should I get tested for Huntington’s?

Brian, young adult, USA

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If your grandmother had HD should you be tested?Y

Q. If your grandmother had huntingtons disease, should you be immedialty tested after, no matter how old you are


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How can I help keep my mum's mind active?Y

Q. Hello, I am a carer for my Mother who suffers with HD and she is very reluctant to leave home. I am worried that if I don’t keep her mind active at home she will get very bored and give up. Can you help me with ideas at all? We live in a ground floor flat. Thanks

Amy-Jo, Young Adult, UK

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Do I just have the chorea and mental symptoms?Y

Q. My mother, grandmother, and 3 uncles have died from HD. My brother is 36 and has been having the symptoms for the last 5-6 years. I am 22 and I’ve known about HD for a long time since I was about 5 or 6. In the last 2-3 years my memory has gotten pretty bad as well as behavioral.

Could I be suffering from just the mental part and the chorea and other symptoms come later or is what going on with me normal? I dont feel normal like I used to

Cici, Young Adult, US

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My mum isn't showing signs, should I get tested?Y

Q. If my mom wasn’t diagnosed with Huntington’s until she was 30 when should I get tested if I’m not showing any signs of the disease right now? And if the test comes back negative when should I go and get tested again?

Katelyne, 21, USA

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I have symptoms, should I test for HD?Y

Q. Over the past few years I’ve noticed a substantial decline in my speech and movements. I do not have access to my biological father’s medical history, but I do know that HD does not run on my mom’s side. Would it be foolish of me to want to get a genetic test for HD?

Erica, 21, USA

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Do I need symptoms to test?Y

Q. My father has HD, I would like to know if I need to show symptoms to be able to do the test. Thank you.

Marina, 24, Brazil

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I'm pregnant and 17, can I get the test?Y

Q. I know that the test for Huntington’s Disease is only for over 18s but if you are pregnant at 17 and want to have the test to see if the baby would be at risk can they make an exception?

Ella, 17, England

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Does the oldest sibling get HD?Y

Q. Hi, I want to ask somethings about HD. My grandma had it and she had 3 daughters. Now my mum is suffering from HD, and she was the elder one of the 3, Has it something to do to be the elder?

Lola, Young Adult, Spain

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Does my friend with chorea have HD?Y

Q. a close family friends mother passed away from hd in her forties. about a year ago my friend had chorea like symtoms. they lasted almost 6 months. he just turned 30 and the jerking movements have completely stopped. is this common for someone with hd? he refuses to get tested and insists he doesnt have hd. i would be grateful for any feedback.

Shirley, 30, USA

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My husband has bad symptomsY

Q. My husband is an HD carrier, he is impotent, aggressive, nervous, doesn’t like to talk, after the diagnosis he is getting worse, are these symptoms normal, he is being treated in Sarah Hospital since 2013.

Regi, young adult, Brazil

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Is HD in adolescence more severe?Y

Q. I would like to know if the HD that starts in adolescence is more aggressive/severe. I have a 21 year old daughter that started the disease at 15 years old. When I compare her with other family members I think her case is much more aggressive/severe.

Sandra, 37, Brazil

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Can symptoms develop at any time?Y

Q. My mother is 48 and over the past couple years we have noticed her movements and speech seem to be off. Can the symptoms develop at any time, even if it tends to show up much earlier in our family?

Bailey, 23, USA

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My mum is 60 without symptoms - does she have HD?Y

Q. My mum is 60 now without any symptom of the disease. Can she suffer from HD? Or, Can she carry the gen and pass it on to me or to my brother?

Clara, 24, Spain

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Living in Sri Lanka and HD resources for testingY

Q. My mother had Huntington disease and she showed symptoms at her age 45. Gradually it became worst. She got paralysis at the age of 54 and after two years she died because of the disease. She suffered lot from this illness. She ate little food and she got huge weight loss. We lived in Sri Lanka and in this country this disease concerned as a rare sickness and did not give proper attention to these patients … I want to know if i diagnose this disease at this age whether it can be help to get rid from this illness. Please help me to make my mind….

Dul Shani, 21, Sri Lanka

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How can I help my mother with diet and exercise?Y

Q. Good night, this year, in July, my mother, who is 45, exhibited severe seizures, being hospitalized several times. The diagnosis was HD, which was confirmed with a genetic test. I’m the oldest daughter and I would like to receive information about eating/diet and what kind of exercise I can help her to do…

Etienne, 22, Brazil

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Should I be concerned about my 10 year old son?Y

Q. My husband (42 years) has Huntington’s disease. Since March he is unable to work. We have 2 sons (10 and 12 years). By chance I filmed my younger son during our holiday while running at the beach. He makes clear choreatic movements with hands and arms… What shall I do?

Gaby, young adult, Germany

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Is my husband developing symptoms?Y

My husband is 30 years old and has a history of HD in his family. How can I look at this behaviour, meaning, is it possible that he is starting to develop symptoms?

Ana, young adult, Brazil

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Will a cure help people who already have symptoms?Y

If a cure is found for HD, is it possible that people currently suffering will get better? Or are the effects caused by HD permanent?

Jodie, 26, UK

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I'm looking to get tested soon but am sure I have the disease, is that common?Y

Hi. I’m looking to get tested soon. I am sure I have the disease but don’t show any ‘clinical symptoms’. I understand it is normal to feel this way. I’m just wondering if there is knowledge amongst the professional community about any very very early symptoms? Is it common for the ‘at riskers’ to suffer from ‘med students syndrome’?

Neville, young adult, Australia

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Is there anything that can help kids with the gene?Y

My late husband had HD, I have 11 years old boy , is there anything which help these kids if they got the effected gene

Sara, 30, Pakistan

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Do you have to have a parent with HD or can it just be in the family?Y

Ok I know i am not a young adult but i have questions and concerns about HD. Do you have to have a parent with HD or can it just be in the family? My husband is 36 and i don’t think he has any signs but i am concern for my nephew.

Sara, 34, US

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Is it worth the risk?Y

I plan on getting tested for HD soon hopefully but at the same time I want to start a family. If I test positive I don’t want to pass it down to my children if they have the chance. Is it worth the risk?

Ashley-Marissa, young adult, US

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I feel I have symptoms of HD, who should I talk to?Y

Whom do you suggest I should approach if I’m unsure whether I have HD but I feel that I have most of the symptoms? Please guide me whether a GP would be able to help out or whether I should visit a Neurologist? Thanks.

Alison, 27, Malta

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What kind of natural remedies can I take or things can I do to stave off HDY

Hi there everyone I was wondering if I could get some advise on natural remedies and things I can do to stave off Huntingtons.

Francis, young adult, Australia

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Questions about eating and choking and what people with HD feelY

Is it normal that my mom is only 55 years old and is still eating but very little and with choking. Is it possible she will not speak at all? Is it likely this will occur soon or how long can it take?

Lorena, 24, Spain

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My mother had huntingtons, do I?Y

My mother had huntingtons and some doctors said the disease HAD to be passed…. BUT, some said that it COULD be passed…. My question is, does it HAVE to be passed or what?


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I don't want to get tested - what are the options for having children?Y

My great-grandmother had HD and I’m thinking about having children in the future. Am I being too cautious/paranoid about it all as my risk is low? Secondly, do you think I would be allowed to adopt a baby with my partner given my at-risk status?


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How can I support my friend whose mom has HD?Y

I have a friend whose mom has Huntington’s disease and he has a 50% that one day he will one day develop the disease as well. How can I help him stay calm?


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What can I do to help with spilling things and falling?Y

I recently tested positive for HD. I was wondering if any one has any ideas about how to help with spilling things, and falling?


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Options for having childrenY

I was wanting to know how the natural birth is meant to happen?


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If no one in my family has been tested can I get tested?Y

If no one in my family has been tested can I get tested? Also would you want to be the one to tell your mother and grandfather they both DEFINITLY have Huntington’s?


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I've been showing early symptoms of HD, should I get tested?Y

I’ve been showing early symptoms of HD, should I get tested?


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HD and attentionY

My father suffers from HD and he always tells us to shh but then he talks away to us.


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Does everyone with the gene get symptoms?Y

Even though you are positive for the gene, does that mean you are for sure going to develope symptoms?


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Multiple sclerosis and Huntington's diseaseY

I have multiple sclerosis and the HD gene, how do I know if the HD has started?


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Repeat count and symptomsY

Does my repeat count affect when I’ll get HD symptoms?


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Is there any way to slow down HD?Y

My mother has HD, along with one of my uncles and one of my aunts. My grandfather also had HD but he has passed on. I am unsure about having children because of this disease, and I am also unsure if i ever want to get tested, simply becuase of the emotional scars I have already undergone. So my question is this, if i were to have HD, what can i do RIGHT NOW in my life to help slow down the effects of this disease?

Maria, 21, USA

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What are our options for starting a family?Y

My partner and I are thinking of starting a family, but I don’t want to have any kids at risk of HD. What are our options? Where should we go for help?

Lucy, 26, England

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My grandad has HD - am I at risk?Y

I have just found out about Huntington’s disease being in my family, my granddad has been diagnosed with it at the age of 71. My mom doesn’t know if she has it yet. Am I at risk? If so, can I get tested?

James, 21, USA

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