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

Nikki is from Hartlepool, where she lives with her husband John, who has Huntington’s disease, and four children.
With the help of her children, Shayne and Chloe, Nikki talks about the emotional toll living with Huntington’s has taken and her worries about the future for her and her children.
To learn more about the realities of caring for a loved one with Huntington's and to explore the impact of the condition on everybody within the family, please visit our Family Matters campaign website here: hdfamilymatters.com/
Please do get in touch with the Huntington's Disease Association (HDA) 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 England and Wales. The HDA (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: www.hda.org.uk/

[@katydid1600]

I'm sorry for the loss of your husband. You have the sweetest family.

[@janececelia7448]

I fail to understand why some people are willing to have child after child hoping that one of them hasn't inherited a deadly disease. I'm not saying this is the case here, but I know it happens. I can understand why these kids wouldn't want to know if they carried the gene as there currently is no cure. However, I'd want to know at some point so I could decide whether or not to have children or have my embryos genetically screened before implantation. Bearing in mind, the child I brought into this world would likely have to care for me at some point; a heavy responsibility for any young person to deal with where the child could also have inherited the disease and now sees their future staring back in the face of their sickly parent. Genetic and family counselling is so important in these situations.

[@tasidasilva7897]

I think it depends my grandad had a hereditary form of muscular dystrophy although its a mild form of it and he could still walk into his 60s and even 70s. my mom actually has it and is quite asymptomatic at the same age when most would be having more difficulties and im still good in my 30s while he had symptoms as a young kid. bit the type we have has incomplete penetrance so I dunno I guess it depends. We have a form that is 50/50 but the symptoms can be really mild hence why my mom has it very mildly. But from what I understand Huntington's gets worse with each generation.

[@wanjahe8749]

​​@@tasidasilva7897are you a woman? Because of you are it really sounds like your disease is x-linked. X-linked illness es are 50/50 but they affect much worse than women. Genetic counceling is still really important to make sure people know exactly what they are up against. A lot of women with x-linked diseases never get diagnosed until they have a boy with it. I know that because it happened in my family. Huntington's typically gets worse if it's passend down by the father because the mutation is much less stable in the sperm

[@wheatstonebridge]

​@@tasidasilva7897muscular dystrophy is not the same as huntingtons

[@theemeraldcity94]

Such a loving family. May The All Mighty give you all strength, patience and good health Ameen . Pray and have hope .

[@joycedurham1729]

Why would anyone bring a child into the world to suffer even if its 50 50 chance

[@bettinakrugermenschenkind9673]

😢❤❤❤❤

[@skinnylove911]

Because it can vary person to person, not all people with are severely disabled by it. Those who have it think of as living with diabetes.

[@surlywithfabshoes]

Why would her husband wait to get tested if his mother had it ?? They just buried their heads in the sand and had kids anyway knowing how high the risk is. And now they are encouraging their adult son to bury his head in the sand? Selfish and irresponsible.

[@elizabethmiller5216]

I 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.

[@lggfhfg]

Is there a cure now?

[@elizabethmiller5216]

@@lggfhfg well it certainly looked like the pubmed report on cat's claw and brain was a good prospect for alzheimers and HD is similar

[@Jessica-yp2bw]

Why do people with inherited genetic diseases procreate? It's cruel to subject other humans to this as they have no say it in. Please start adopting - its more sustainable and friendly to the environment too!!

[@pripri3404]

I feel awful saying this but I feel the same.