Living with Juvenile Huntington’s Disease

This video may be upsetting, if you need to talk, contact us at: [email protected] Living with Juvenile Huntington’s disease Mia would have been nineteen this year
Mia’s dad and I were married in 1996 his mother had Huntington’s disease when I
met him and I just remember thinking that it was the worst disease ever it tore
our family apart HD is often portrayed as a condtion that only affects adults. But people can get HD at any age, including as children my husband had Huntington’s disease and
now Sheenam my daughter Sheenam used to fall down quite a bit but I just thought, is that right you used to fall down quite a bit? this so for me it was just like a normal
thing that a child does. I knew I had it… You knew you had it? Yes It is estimated that between 5 and 10% of HD cases occur in children This is known as Juvenile Huntington’s Disease when I was dating Ellie’s dad I didn’t
know that they had HD in their family and then I became pregnant and I
knew that she was at risk the one thing that we thought for sure is that we had
a lot of time on her hand we and I thought you know I just have a tiny
little baby and we have lots of years and lots of technologies develop so
we’ll just deal it deal with it if we ever need to
Toby was seven years old when he was diagnosed he would trip over things drop
things. yeah he used to fall downstairs and all of that kind of stuff
really. It was upsetting sometimes but got through it because I really loved him a lot. He was my best brother I ever had anyone The only one you ever had! We were best friends
about we do everything together. Eloise was diagnosed two months for Coby died
and that was the summer of 2008 juvenile HD is similar in some ways to
the usual adult-onset but also has its differences we think of Huntington’s
disease as causing trouble in three different areas in the movement the
thinking and memory and learning and also mood and certainly children will
have those same kinds of symptoms but the details sometimes are a little bit
different for children than for adults the mood changes can be fairly dramatic
particularly if the symptoms are beginning in the teenage years we woke
up one night and Mia was literally beating us up with a lamp off our
nightstand I looked at her and she looked at me and she was terrified and I
knew the night that that happened I said this is not normal
there’s something happening with this I think for me the time when I began to suspect something was wrong was with mood changes and also decline in school work. In school she had a lots of learning problems cognitive
learning problems and so I didn’t know that that was a sign of HD at all it
wasn’t tell she was a freshman in high school and it became glaringly obvious
if there was definitely more issues I just get tired walking sometimes
shaking and sometimes got the faces well sometimes I struggle doing things so mom
sometimes helped me, sometimes yes! hmm all the time there was a local
conference in Minnesota for HD I went and I met dr. Nance and and that’s when
it hit me like for real yeah they went down the
list of symptoms and so many of them like who who everyone we here was like
okay check check check and kind of dawned on us a part of the way
through that was a real possibility at that time my mom first came home and
said like they think that Mia I could have Huntington’s I before that never
knew that little kids could have it like that was the first time I’m here so it
was just like really shocked everything that I thought I knew about Huntington’s
clearly I didn’t I didn’t know kids could even get those I always thought
that it was kind of something I was late onset like I didn’t understand that it
really could impact children as well Got diagnosed on my father’s funeral A day we’ll never forget initially you laughed but then
what happened after that? I would sit in the same chair all day and night. How long for were you depressed? About 2 years Living a full life with JHD there is meaning in life after a
diagnosis of Huntington’s disease one of my dearest patients over the years was a
little boy who had really the world’s worst case of Huntington’s disease it
began when he was 2 years old but the kids in his class at school really
embraced him and there was and they took care of him and they loved him so here’s
a child who could hardly move you know at age 10 because of terrible
Huntington’s disease who brought meaning to the lives of all of his classmates
Mia inspired so many people when she was here and for people who are out there
right now who are where we were in 2006 know that your kids are going to inspire
and change the lives of so many people can you think of one word that would describe Mia? special awesome Ellie’s doing great she’s 18 years old she graduated from
high school she has a community support she’s doing a great program for kids
with special needs to making 21 a transition program she’s got a job the
light in a lot of people’s lives she has affected more people’s lives and
I think any of us know can you two tell me what is an All for Elle day?
We have a huge carnival we play games, Bouncy castles. Lots of people.
we’re sharing about Huntington’s right how does it feel to have the whole
community support you? It feels amazing we literally just do as much as we can
together and get out together we have breakfast together now just go to school and I really love it there. Her school bus bus she leaves to house five to seven
gets and gets to school at quarter to 9 But she enjoys the school school play she never moans about going. You’ve moved into a flat… but before then you actually
started your studies didn’t you? You went to university and you did
international tourism management and where did you travel to? Miami and Michigan, you had placements out there didn’t you Can you tell us about Sheenam’s Wish?
Sheenam’s Wish is a charity Sheenam said that she wants’s to raise ten thousand pounds
for which we think about hundred young people (with JHD) in the country to give them all
to have some fun we are in a brand new era in Huntington’s disease
research were therapies that are directed at the gene mutation itself are
now being studied in human beings with Huntington’s disease this is not just
mice it’s not just test tubes it’s actually trying these these gene based
therapies in human beings if there was ever a disease for which gene based
therapies should it’s Huntington’s disease What would you tell other young people who have HD? just to stay positive and
embrace all the good things do all the fun things you can do. to
stay strong and believe in yourself We would like to thank the young people and families in this video, who shared their stories so bravely and show such strength on a daily basis. We would also like to thank Dr Nance for her support and knowledge on this video, and also her commitment to helping families affected by JHD.

100 Replies to “Living with Juvenile Huntington’s Disease”

  1. My friends grandmother and uncle both had HD as adults and lucky none of the kids (and my friends dad) don’t have it (yet) which is so lucky. I kept seeing comments about how these people should have kids and it’s so rude to say that. These people may already blame themself and I feel like it’s so much worse to see comment with people telling than that. My friends family was all fine and it’s not fair for her mom just not to have kids because of a small risk. If possible yes get genetic test and do IVF but I know this isn’t possible for people and some of these people’s kids were probably accidents.

  2. These are adorable people. May universe give them will to live their lives with ease. But we can't ignore the fact that This is what happens when you create a child within a gene pool which is closer to your genetics. We need multiculturalism, people of different ethnicities must come together and create healthy children. I know I am sounding dick to you all, but it is what it is.

  3. as a child of an HD parent, with 3 other siblings, i think it's simply abhorrent to call parents selfish for having children. in some instances, parents can't bring themselves to terminate their child in cases where the child was conceived accidentally, and why should they be faulted for that?

    i would rather be alive and potentially live with HD than not ever be alive at all.

  4. One of the WORST conditions ever known. I can't imagine. Do hope research can find a breakthrough to slow and/or stop the progression of this.

  5. We just finshed lering aboit this in my biology class , yes it is sad but I must say it is interesting to learn about along with a few others that we learned

  6. It’s unfortunate seeing so many blaming families for having kids ‘knowing’ the risks. FYI having kids is a risk in itself. There’s plenty of kids who have disabilities and plenty ‘typical kids’ who get into accidents, suffer strokes, develop mental illnesses, and don’t end up ‘perfect’ even if they were born with nothing wrong with them. Stop deciding who gets to have children and who doesn’t just because you came out grade a and other people don’t end up that way or weren’t born that way in the first place.

  7. I’m sorry but if I knew my partner had this condition within your family we’re doing genetic testing. I would do anything to even prevent the possibility of my child suffering

  8. Please don't conceive children if you know this disease runs in your family. Even if there is a chance your child wont have it, they can still be a carrier and they will have to weight and fear to carry. Please adopt. There are so many babies, kids, and teenagers who so desperately need a shot at life and a family. They are already here!

  9. This disease has killed so many people in my family. All 4 of my grandpa's sisters had it and passed it to a lot of their kids. I didn't know we had HD in our family, because my grandpa died when he was 80 without showing any symptoms, so I guess that means my mum and her siblings, my cousins and my brother and I are safe. I'm still worried that there's an unlikely chance for us to get it though because there is a grey zone. Some people that have the gene don't have symptoms and can pass the disease, do any of you guys have experience with that or is it too farfetched? Last week I noticed that I'm shivering (hands, sometimes head) without any reason and sometimes a muscle is twitching. Most likely, it's just a symptom of stress or maybe some lack of minerals but I'm still worried. If you have such a horrible disease in your family you just get paranoid.. I send love to everyone who has to deal with that.

  10. one thing that amazes me is how hd changes our faces. even though we are unrelated we look alike in the end

  11. The need to have children is of course natural. But adopting children, would be a another option, than risking your child to such a horrible disease.

  12. If you have Huntington’s Disease or it’s in your family do not have children, do not pass this horrible disease on, it’s cruel, I have known two families with this and they have no regard for passing it on neither family cared, one girl had Huntington’s and then had children ….why?

  13. I'm sorry but its crazy irresponsible to have children knowing how terrible and incurable the disease is. Can't believe the selfishness

  14. This is a sad sad disease I saw it back in the 90’s with a woman in her early 20’s horribly hereditary! All dead by 30. Wonder if fasting would do anything? Can’t hurt to check? Look into Dr Jason Fung

  15. me and my brothers have agreed to never have children because HD runs in the family, some of these people need to consider the risk more seriously

  16. The beauty and curse of the internet is that you find out about these sorts of things and get insight on people that you would previously have dismissed as simply physically and/or mentally disabled and left it there.

    But it does remind you how easy it is for the human body to go wrong and how much suffering can be caused when its code has bugs.

  17. Thank you so much for sharing this. I'm in medical school with a neuro exam tomorrow about the basal ganglia. Just finished reading about the clinical aspects of things so i went on to watching something that could close the chapter for me. I'm so glad to have stumbled across this, it reminded me of how much people I can help when I finish my education. God bless the children affected by neurodegenerative disorders and their families.

  18. Dear god let they loveing beautiful wonderful children live a long life. They need a life with a lot of love. I feel bad for they kids and the kids that die may they be with god forever

  19. Their actions are beyond selfish. They knew that their children had a high chance of developing the disease (Huntington’s disease has a dominant gene) yet they still had children. They were entirely aware that their children would suffer either later in life or earlier like these children. No person should be made to suffer for someone else’s personal gain.

  20. It’s so surprising and eye opening to watch this. My grandfather passed away with HD and in our family it got passed to the two brothers (who haven’t shown many/any symptoms until their early-mid 60’s)but not the two sisters, I’m just wondering if it will skip a generation and effect all of us kids. It really is an eye opener.. I wouldn’t want to put my kids through this and then again I would love to have kids. It’s a scary world.

  21. People are thinking why risk it? Well, you cannot be a mother or father or even have a purpose in life, when you don't have your own child and some people in the world may be selfish but in a way, they can feel love for their offspring.

  22. This is so sad. My grandfather passed later in life with this and my aunt passed when she was a teen.

  23. My grandmother, my aun and uncle all passed away from this. Now my mom has it and im really scared me and my sisters might devolp it,

  24. I really cannot believe that someone would play russian roulette with a child's life knowing they carry such an awful genetic disease.

  25. Well I'm grateful I'm healthy anyway even though I have ezcema and have been bitten by a lot of mosquitoes at my dad's store and that my feet hurt now from walking a lot and these people definitely have it harder than me since they are living with the disease and it's good they have a great support system and also my auntie from my mom's side of the family pretty much died from liver cancer like in March of 2016

  26. Im 63, so most folks my age know the story of the famous singer, Woody Guthrie and his son Arlo. It's quite the interesting story. Houses being burned down,…

  27. I wonder if CBD or Magnesium Threonate or RNA or others things good for the brain could help. This is absolutely heartbreaking and that anyone should have to endure this. I am truly sorry for those who suffer from it and their loved ones. Stay strong, friends.

  28. These are some beautiful and amazing children and families. God bless each and every one of them and anyone affected by this disease!

  29. Please hit me up on Amy allison my mom has it and my sister I have not been able to go see them knowing I skipped it and my sister never

  30. There is gene testing that can be done at the sperm/egg level. They can identify a healthy sperm/egg, and couples with HD can have healthy children and stop the disease from continuing in their family line. Granted, the procedure is expensive, but it's an option. The other is to adopt. Passing it on deliberately is not.
    For the record….my wife has HD, and the onset has begun. Our 3 children have been educated not to pass this on given the 2 options mentioned above. Unfortunately, my wife and I did not have this information back in 1989, or we would have exercised these options ourselves.
    I pray God gives all of us dealing with this terrible disease the strength to endure and be there for our loved ones. God Bless.

  31. There’s a trinucleotide repeat pattern in chromosome 7 ! So with each successive generation this mutation accumulates… so progressively the age of onset will decrease as more mutation repeats mean more abnormal proteins and faster onset. That’s why it’s important to identify the person who has it ! Also it’s an autosomal dominant type of disease ! Which means a 50-50 chance of transmission into the offspring so wary gene testing can be helpful

  32. Very strong kids ❤❤, they are the bravest 😍😍, God Bless them always,except who they are and enjoy life to the fullest 😘😘

  33. The kids are so strong. I am so glad they have people who'll support them and help make it threw the difficulties that life has giving them.

  34. I have a genetic condition, bedridden at 44yrs of age. My son inherited it and has struggled since 8yrs of age. I didn’t know I had this when I made him, and once I learnt I did have it I didn’t roll that dice and risk giving it to another person. To say that you are going to have that lovely little baby, and have a lot of time with them, god that infuriates me, this is a human being, not a puppy, if you have a hereditary genetic condition that destroys lives, don’t have children!!!!

  35. Good gracious! It is not juvenile Huntington's disease. It's Lyme Disease. Mother had it then gave it to her children. ANY autoimmune disease being considered must first prove first it is not Lyme disease according to the top researchers. A good, Lyme specialist must do the testing because mose doctors, even specialists don't know how to test for it, much less treat it. Good grief! The problem with Lyme it has symptoms similar to Huntington's, MS, ALS etc. Lyme also causes other bloodwork to be positive, like Huntington's, RA, MS, etc. High inflammatory markers also. This is such a misdiagnoses.

  36. My grandpa was scared he was a carrier of HD because half his father's brothers had it. His father(my great grandpa) died before he would have started exhibiting symptoms(early 40s in my family). Thankfully he wasn't (he's 81 and still works) but I know that if he had had it, and I was a carrier of it, I would definitely not have kids.

  37. Huntington’s as been in my life forever. I’m a survivor. Please pray for my nephews, they are awesome. My sister was not a survivor. A male has never passed it on in our family. It’s been all females. Please help me pray for these awesome young men, that both have college degrees, both have beautiful, great women in their lives. Pray for me because I’m the bearer of bad news for them. Looking Huntington’s straight in the eye is the best way to deal with it. No secrets, and staying informed.

  38. I was a hospice nurse, I took care of ppl with Huntington's disease, I feel Huntington's is one of the worse diseases out there. God BLESS you all!!!

  39. If one of your parents have HD you have a 50/50 chance of getting it. If you don't have it your children cannot get it. My mother had it, one brother and one sister had it. The sister had two children who had it. One of her daughter's that is still alive has had it for years. She looks so thin and has trouble talking and doesn't walk too good. She drinks beer daily and smokes pot every day. Her husband thinks that the pot is helping her. I don't know but it might be.

  40. I am about to graduate from NP school and I read about the disorder. I looked up some info on it and your video came up. Thank you for educating us on this disorder. You are amazing!!!!!!

  41. Bummer that they're doomed. Per chance an appliance can be engineered to restore movement & cognition for a limited time. Cheers!

  42. I am really close friends with a family who suffers from HD and JHD. The father lived with it for 7 years after being diagnosed and died from it, and now 3 out of the 4 children have been diagnosed with it. The youngest one is barely able to walk and cannot eat on his own (he has a feeding tube). HD and JHD is a very real and serious disease that affects so many people, and I hope and pray they can find a cure for this disease and wipe it out. In the meantime, I highly recommend getting tested for this disease if it runs in your family and NOT having kids if you have it.

  43. I tested positive for it on my 28th birthday. Life changed all of a sudden. I started making bad choices. The only good thing about it is that I'm 31 now and can hide the disease. I'm clumsy every now and then but I can still work better then others. I'm actually very smart. I won't fully develop the symptoms until I'm around 60. I know people without it dying earlier. Just hope there's a cure that can give me an extra 10 years. My dad is 70 with it and outlived my uncle who was an alcoholic. If anyone who has it is in California, it would be ok to reach out to me.

  44. I feel like with the cost of healthcare a lot more energy should be put into lesser known diseases. More research, more questions and hopefully more answers.

  45. My family has a Best Case Scenario version of HD. If you have to have it this is the way to do it. Main symptoms are light to moderate tremors and problems with things that require a cadence, like a slight stutter to speech. It's not uncommon to have very short tempers in affected members. One or two are so anti-social that it's a big impact on their life. Swallowing difficulties usually develop when we are old. My grandmother and one or two other relatives have died of pneumonia because they aspirated food or drink. It's a hard disease to explain, even to doctors who haven't studied it because there is a whole basket of possible symptoms and not everyone has the same combination.

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