Anna’s story - Family Matters - Huntington’s Disease Awareness Month 2021

Sdílet
Vložit
  • čas přidán 10. 05. 2021
  • Anna, who is from Scotland, is 23 and is living with Juvenile Huntington’s disease.
    Anna and her parents, Catriona and David, share their story, explaining how they have navigated the realities of coming to terms with life with Juvenile Huntington’s.
    If you are inspired by Anna’s film, please explore the Family Matters campaign website: hdfamilymatters.com/ and help raise awareness for Huntington’s disease.
    Please do get in touch with the Scottish Huntington’s Association (SHA) if this film has raised difficult issues for you and you feel you need to speak to somebody or if you want to help raise awareness for Huntington’s in Scotland. The SHA (part of the Huntington’s Disease Alliance UK and Ireland) does amazing work to promote awareness of Huntington’s disease and improve support for families. Find out more here: hdscotland.org/.

Komentáře • 75

  • @holliejohnstone3897
    @holliejohnstone3897 Před rokem +45

    I'm 25 and I also have juvenile Huntingtons Disease. I can barely move anymore and I've nearly died a few times from chocking on food and drink. I inherited this from my mum who died in 2018. She was only 44. I miss her so much.

    • @AfkBxndit
      @AfkBxndit Před 7 měsíci +1

      I was just curious. Do you notice like your own psyche getting worse? like do you still feel the same as you did before symptoms?

    • @keciaaskew5166
      @keciaaskew5166 Před 6 měsíci

      I never heard of juvenile Huntingtons Disease. Is this disease apart of childhood dementia?

    • @jdmmg4904
      @jdmmg4904 Před 5 měsíci

      😢❤

    • @overgrownkudzu
      @overgrownkudzu Před 5 měsíci

      @@keciaaskew5166 no it's different, it's a genetic mutation as well but it's basically the same as normal huntingtons' just more aggressive and earlier

    • @user-yp1gy3mv9g
      @user-yp1gy3mv9g Před 4 měsíci

      Thinking of you lovely you are an amazing person sending you love and Aroha ❤🎉❤

  • @yvonnesanford452
    @yvonnesanford452 Před rokem +10

    What a lovely, loving family. May God bless you all.

  • @debbiejansen1178
    @debbiejansen1178 Před 2 lety +71

    Anna is blessed with loving caring parents. It is a horrible disease. I hope that a cure is found soon.

    • @marieholmes6480
      @marieholmes6480 Před 2 lety

      I got cured permanently with dr iyaremoses herbal medicine on CZcams #driyaremoses

    • @ahmedbaba4488
      @ahmedbaba4488 Před 2 lety

      I will never forget the day I came across Dr igho channel on CZcams , I will always keep it memorable, thank you doctor for helping me cure my Huntington's disease with your super herbs completely, and putting a smile on my face, you made me feel more alive like never before, Thank you Dr Igho

    • @sandymuddy5766
      @sandymuddy5766 Před rokem +1

      There is no cure! Scientist are trying to find the path to turn off the HD repeater gene! It's inherented not something you can catch or develop if you have not been passed the gene from one of your parents.

    • @deepakkhadka6369
      @deepakkhadka6369 Před rokem

      You really cured Huntington disease?

    • @pavithrasridhar586
      @pavithrasridhar586 Před rokem

      ​@@ahmedbaba4488 hi u really got cured of HD pls repky

  • @LuLu-gc3qn
    @LuLu-gc3qn Před rokem +14

    Anna is beautiful and loving. The kind of daughter any parent would want to have. Gorgeous little Ginger, and her personality seems so much like her parents. Sweet, gentle, positive, and content. She has a wonderful family.

  • @ireneyoung8696
    @ireneyoung8696 Před 2 lety +16

    A happy girl,very brave with wonderful parents to help her.Good luck Anna.

  • @annehunt279
    @annehunt279 Před rokem +6

    My mum died of this in 95 she was only 58 all we were told was that it was hereditary but to this day neither myself or any of my siblings have been tested or counselling given so we're no further forward than we were nearly 30 years ago shocking really

  • @dawndouglas922
    @dawndouglas922 Před 2 lety +23

    Hoping you have happiness in your days, Anna

    • @marieholmes6480
      @marieholmes6480 Před 2 lety

      I got cured permanently with dr iyaremoses herbal medicine on CZcams #driyaremoses

  • @nag5253
    @nag5253 Před rokem +9

    What a dear angel that girl, what a big kind sincere smile, just melted my heart. She will have the best place in heaven of all of us.

  • @GillianMorrison
    @GillianMorrison Před rokem +11

    Anna is not remarkable BECAUSE she has Huntingdons, Anna is remarkable because of her outlook and character, passion for life and her solution-focused attitude. And though she has this terrible illness, she is not defined by it. Thank you for sharing your story Anna.

  • @pawsomeblog8909
    @pawsomeblog8909 Před rokem +7

    Anna my daughter is 13 and captivated by diamond art. She is so chuffed to hear of your works and making Disney brillant for her. Thank you Anna :) x

  • @JonathanHernandez-mm3nd
    @JonathanHernandez-mm3nd Před rokem +6

    May god be with Anna and god bless her family.

  • @NickanM
    @NickanM Před rokem +22

    @ 01:06
    That is one of the cutest babies I've ever seen in my whole life! 😍
    (Including my own 2.)
    We must find a cure for this hellish disease!

  • @fernemcallister6774
    @fernemcallister6774 Před rokem +4

    What wonderful parents Anna has.

  • @Ceerads
    @Ceerads Před 2 lety +12

    Beautiful people. I hope all of you have many happy days.

    • @marieholmes6480
      @marieholmes6480 Před 2 lety

      I got cured permanently with dr iyaremoses herbal medicine on CZcams #driyaremoses

  • @mohammedaslam2912
    @mohammedaslam2912 Před 2 lety +24

    It's so nice to see she's living her life and enjoying :)

    • @marieholmes6480
      @marieholmes6480 Před 2 lety

      I got cured permanently with dr iyaremoses herbal medicine on CZcams #driyaremoses

  • @karenlayton5781
    @karenlayton5781 Před rokem +5

    My uncle cand his two sons had HD. Noone else except one cousins son have had it. It is devastating to watch.

  • @hjong8830
    @hjong8830 Před rokem +7

    Anna is a lovely young lady. I wish her and her family all the best. It’s so important to have loving and supporting parents, which she definitely does. Miracles do happen. I hope they either find a cure or better therapies to help stave off the effects of Huntington’s. Much love to Anna and her family 💕

  • @Tlwstg17
    @Tlwstg17 Před 11 měsíci +2

    She is so loved❤❤❤

  • @Livinglife595
    @Livinglife595 Před rokem +2

    Anna you are beautiful and you have wonderful parents. You are strong and give me strength too. Thankyou

  • @marys3127
    @marys3127 Před 2 lety +18

    Her art projects are lovely.

    • @marieholmes6480
      @marieholmes6480 Před 2 lety

      I got cured permanently with dr iyaremoses herbal medicine on CZcams #driyaremoses

  • @vanessasimmons1175
    @vanessasimmons1175 Před 2 lety +6

    A friend of mine died at 24 with this horrendous disease. It was awful.

  • @alisongreen7576
    @alisongreen7576 Před 2 lety +14

    The statistics on the impact on carers is really interesting- and very brave that they were surveyed and the results made public.
    So many people are saying that it's fine for people who have the gene to just have children "because it's natural to want children". Yes, it's natural, but this survey shows the awful reality that people are just ignoring. If you have HD and pass it on- it won't be you caring for your children, somebody else will have to.
    The families that choose not to have children, to adopt, or to have ante-natal testing and to terminate affected pregnancies, are to be applauded.
    So sad for this family who unknowingly adopted a child who was affected, and will now lose that child that they clearly love so much. Of course, the biological family may not have known about it at the time of the adoption, but I can't help thinking that they did. Anna is lucky to have these parents - I can only pray that her adopted sister doesn't have it too.
    The adoptive parents are just outstanding human beings.

    • @marys3127
      @marys3127 Před 2 lety +7

      IVF is a good option, now - to screen out HD-affected embryos. Sadly, it is very expensive.

    • @ruthb.8508
      @ruthb.8508 Před rokem

      Adopting a Child is always a risk. You generally don't know anything about the family.
      I have met families who adopted children and sooner or later they become aware that they develop serious problems like schizophrenia, autism, psychological disorders of any kind.
      A bad idea is to adopt

  • @Allegra11
    @Allegra11 Před 3 měsíci +1

    Bless beautiful Anna and her loving family X

  • @AlisDarc
    @AlisDarc Před 2 lety +5

    5:12 I like their smiles looks so same and familiar

  • @deepakkhadka6369
    @deepakkhadka6369 Před rokem +2

    Lots of love and courage to this little angel. ❤️ ❤️❤️❤️

  • @Eva-nv5lw
    @Eva-nv5lw Před měsícem

    What a lovely beautiful family. I wish many happy healthy days for Anna.

  • @jojoFranklin
    @jojoFranklin Před rokem +1

    Nurture wins … wonderful young lady, wonderful parents. A beautiful thing.

  • @HelloCoco888
    @HelloCoco888 Před 5 měsíci +1

    How can I put this, it must be somewhat reassuring knowing that you did not give her this cruel disease. As much as I love my daughter and would love her just as much unconditionally, I’d rather remain childless than risk passing it onto my offspring. It’s painful for everybody involved, people can do genetic testing combined with IVF to avoid your child inheriting the HD gene, but I don’t even think I could do that. Your daughter is lovely and endearing, it’s amazing that she has two healthy parents to love and support her on this life journey.

  • @lolikodin194
    @lolikodin194 Před rokem +2

    What an amazing family ❤ Loving and supporting each other one day at a time ❤

  • @annmariechinn106
    @annmariechinn106 Před 2 lety +4

    This disease took my father We never knew what is was my father suffered without knowing what was happening to him nightmare the look on his face still haunts me I miss him there Eric 4of our kids and no one has showed signs in us kids

  • @MamaAteistka
    @MamaAteistka Před rokem +7

    That's enough, we need cure for this monster of a disease. I mean Huntington's and ALS are the 2 worst diseases you can get, both without a cure. I know they are working on it , but they need to hurry, Juvenile Huntington's is especially cruel.

  • @oliviaacosta6239
    @oliviaacosta6239 Před 2 lety +31

    I hate this disease.

    • @mohammedaslam2912
      @mohammedaslam2912 Před 2 lety +4

      I hate all diseases

    • @marieholmes6480
      @marieholmes6480 Před 2 lety

      I got cured permanently with dr iyaremoses herbal medicine on CZcams #driyaremoses

    • @ApoIIo_
      @ApoIIo_ Před 6 měsíci +1

      I hope there can be a cure for it soon.

  • @missylearned9821
    @missylearned9821 Před 5 měsíci +1

    A video about this disease showed up in my CZcams suggestions and I clicked because I’d vaguely heard of HD, but didn’t know anything about it. Oh my goodness, what a heartbreaking thing for families to go through. After watching quite a few videos, I’ve noticed that there seems to be a pattern of the people with this disease being quite artistically gifted until they cannot be anymore.
    God bless the people these days who don’t abandon their family members as the disease progresses. I say that because I’ve learned that just a handful of decades ago they might have abandoned them because they believed they were severely mentally ill or alcoholics, drug addicts, etc.
    This actually makes me wonder if some of the homeless people we are seeing in our large cities (I’m in the US) who twitch and flex and who we are attributing drug addictions to, might actually end up homeless because they have HD. I can imagine that in a less educated and enpoverished environment (which you can understand why that would come about), they just say something like it’s the family curse of addiction, get out. I wish someone could do a study.
    This is truly heartbreaking.

  • @vbiasland2406
    @vbiasland2406 Před 2 lety +3

    She is an amazing artist

  • @fionasaunders7646
    @fionasaunders7646 Před 2 lety +4

    What a wonderful and inspiring family, God Bless you all , your example is exemplary. I sincerely hope that the break through in current research will be achieved much sooner than later.
    Much love to you all.

  • @0o0o099999
    @0o0o099999 Před 11 měsíci +1

    I hope that the current genetic diagnostics and hopefully a cure can lift this curse off people in genetic lines with this disease. The implications of being in a family with this disease are really horrifying especially imagining all the shame and secrecy and uncertainty before the disease was more understood. I admire people that keep a positive outlook with that cloud over their head, that takes faith.

  • @pripri3404
    @pripri3404 Před 6 měsíci

    What a lovely young lady and family. Sending love and positive thoughts.

  • @rickboer7715
    @rickboer7715 Před 11 měsíci +1

    I feel the same for people who have M.S. It's just as devastating.

  • @patriciabrockwell-qh4zk

    Thank you for Sharing Your story. You are part of a beautiful family. God bless you.

  • @kathleendowner6506
    @kathleendowner6506 Před rokem +1

    Fab family

  • @madeleinejohnston4790
    @madeleinejohnston4790 Před 8 měsíci

    ALMIGHTY GOD BLESS AND HAVE MERCY ON YOU AND YOURS, ALWAYS, IN THE PRECIOUS NAME OF JESUS CHRIST, OUR LORD AND SAVIOUR, AMEN

  • @tracymcgrath1192
    @tracymcgrath1192 Před 5 měsíci

    Rip❤🌹🙏

  • @bettinakrugermenschenkind9673

    😢❤❤❤❤❤

  • @jdmmg4904
    @jdmmg4904 Před 5 měsíci

  • @cmcmahon8551
    @cmcmahon8551 Před rokem +2

    Did they say the younger child is Anna's biological sister? If so I wonder if she too has been tested?

    • @leilaewen5331
      @leilaewen5331 Před 11 měsíci +4

      I’m her sister, not her biological one but will always her family!

    • @cmcmahon8551
      @cmcmahon8551 Před 11 měsíci +2

      @@leilaewen5331 thank-you for answering my comment. Bless you all as you go forward with your journey.

    • @Live-life-to-the-fullest
      @Live-life-to-the-fullest Před 6 měsíci

      How are they doing now?

  • @colinchick2692
    @colinchick2692 Před 6 měsíci

    It is great that she has such wonderful parents but I cant understand that social services did not do due diligence and find this out. If you take on a child with Huntingdons that is great but not to know is appauling.

  • @jacquelenbialozynski6671

    🎉

  • @elizabethmiller5216
    @elizabethmiller5216 Před rokem

    I am in Invernessand I have found a treatment as I have a young man who I visit because he has been like a brother to my sons since his mother was diagnosed with HD 30 years ago and now he is quite bad himself and in care. The trouble is that although I got a copy of a mouse's brain free almost except one black spot of the tangles of protein, they have taken it off the net. Does anyone want to try cat's claw a rain forest bark as it seemed to help but they just suggested it might help with Alzheimer's and of course the drug companies want to make it into a drug to justify the high charges. God always provides a solution in the flowers of the field as it says in the bible. The patient has rejected it perhaps because his mind is already affected according to the medical people and I can't force him to try it.

  • @MatthewBrackin-1985
    @MatthewBrackin-1985 Před rokem

    Look close the bank

  • @stepht7508
    @stepht7508 Před rokem +1

    It would be so simple to eradicate this horrid disease.

  • @visionvixxen
    @visionvixxen Před 6 měsíci

    I wish Jesus would take this away form everyone