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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.

The Description of Living with Juvenile Huntington's Disease