Small steps lead to big changes

In the first of a series of blogs as part Huntington’s disease awareness month, community fundraiser Gemma Powell looks at how even the smallest actions are creating big changes in the lives of families living with HD.

When Scottish Huntington’s Association was founded in 1989, there was very little understanding or recognition of Huntington’s disease. This lack of awareness, which has impacted upon generation after generation, is often considered to be as harmful to families as the condition itself.

Our families living with HD still need to explain themselves over and over. They have that all-too-familiar exchange of: “No they’re not drunk, they have a condition.” We’ve come a long way in the past 30 years, but today there are still people living with HD across Scotland who are isolated in their communities. This is not, and has never been, okay.

SHA is the only charity in Scotland that is committed to working with the HD community and the wider general public to create real change for people living with HD. With every campaign, every conversation, every share on social media, we are helping to reduce the stigma and empowering families to talk openly and to seek support when they need it – be it from a friend, SHA or health and care services. 

The sum of all our actions, great or small, WILL lead to a better HD Scotland. Here’s a few simple steps you can take:

  1. Like, comment and share! Follow us on social media, help spread the word and encourage your friends and followers to get involved.
  • Facebook ‘Scottish Huntington’s Association’
  • Twitter ‘ScottishHD’
  • Instagram ‘ScottishHD’

2. Join our mailing lists and forward our newsletters to three people who are new to SHA. Did you know we send out three different newsletters to people and organisations all across Scotland?

  • If you’re looking for research news, make sure to subscribe to HeaDline.
  • To learn all about fundraising, sign up for our regular e-bulletin full of the fantastic things people in the community are doing for HD.
  • Or if you prefer to keep up with the charity more generally, subscribe to SHAre, our seasonal newsletter.

Subscribe here – and remember, there’s nothing stopping you signing up for all three!

3. Share your own experience – if you have been impacted by Huntington’s disease in any way, your story is worth telling! The most powerful way to increase understanding is to give a platform to people with HD, their carers, young people, professionals, family members, friends, and colleagues. By sharing your story through SHA, you will help to raise awareness and provide comfort and reassurance to other people who are going through the same thing! Have a read at some the stories in this blog and get in touch if you fancy sharing your own.

4. Become a You, Me and HD ambassador. You’ll give talks to groups and organisations in your local area and champion your efforts and the work of charity on social media! If you’re looking for a volunteer opportunity that delivers real impact and supports you to develop new skills, this is it! Training is provided and out of pocket expenses will be covered.

Lucy’s Story

This blog piece has been written by Lucy, 19 from Glasgow.  Lucy is currently studying Healthcare at college and works part time as a Healthcare Support Worker at the Queen Elizabeth University in Glasgow.  She lives with her Mum, and younger siblings 

My Mum is the only person in my family with HD – all of her siblings (and my cousins) have tested negative.  It’s not been easy learning to live with HD.  One of the first symptoms we noticed about mum was some twitches in her face and body, and how difficult she was finding it to move about.  Now she also finds it difficult to plan and organise things and we’ve noticed her judgement, thinking and reasoning are all affected.  One of the biggest changes I’ve had to get used to is my mum’s mood.  She can be very obsessive about things and checks, and rechecks, things all the time – or asks the same question just once more to be sure.  She also has low mood and anxiety.

‘I know you’ve taken that £20 Lucy, I know it was you – it couldn’t have been anyone else’.  I’d been asleep after a nightshift, and Mum came in shouting at me while I was still sleeping.  I was so disorientated it took me a while to understand what was going on.  I was asleep and I was getting shouted at, and worst of all I had no idea about any £20.   I had to get out – so I took the dog for a walk.  Later, my brother said that mum had given him the money for a school trip – but she had forgotten in the couple of hours since he’d left. 

It’s been almost two years since my mum was diagnosed. 

Before then, I’d never heard of Huntington’s disease and I was blindsided by it.  My mum inherited the faulty gene from my Granddad – but unusually she was diagnosed first, and then they found out he had it too.  I remember, years before Mum was diagnosed, we would notice subtle movements in her arms and face, and there was a change to how she was walking.  We often described her as being quite ‘spaced out’. 

A total shutdown.  The actual diagnosis came as a big shock to us all; mainly because we had never heard of this illness before.  My initial reaction was relief – we could finally put a name on what had been wrong with mum.  The first thing I did was to do some research on the internet.  It freaked me out and it was probably a big mistake actually. First thing I saw was that HD was inherited, and passed on through families, with all of us now having a 50% chance of inheriting it too.  After that I totally shut down.  Talking about it – even hearing the name – terrified me.  I was offered support from SHAYP (Scottish Huntington’s Association Youth Service), but I shot down any opportunities; it was too much, too difficult to face. 

After a few loooooong months, I finally agreed to meet with a Specialist Youth Advisor from SHAYP – but I had a plan; wait for 15 minutes and then have an emergency exit plan! I didn’t need it.  The SHA had been incredible in supporting my family through these couple of months. 

Huntington’s disease was a BIG SCARY, closed book that I didn’t want to open.  I really struggled to accept it, the changes to my mum and my own future, I felt really alone

After speaking with SHAYP, I felt a huge weight lift off my shoulders and I realised that I wasn’t alone – I found out about other young people who have also been through what I was going through.  I’ve been meeting up with them every month now – and gradually, bit by bit, I’ve been able to open up more, talking about it, and start to accept it.  My mum gets fantastic support from her HD Specialist, and now I feel I can be open and honest about HD, and I no longer feel embarrassed about our situation.    

Adjusting to HD now being part of our family has been a big adjustment; and it hasn’t been smooth sailing.  There have been a lot of changes that we have had to accept, but the support from the SHA has been amazing and it’s made that journey a lot easier for us all.  We are now a lot more open about it, and we can support one another with it.  Knowing that I’m at risk has its good days and bad.  I’ve learned to take each day as it comes and accept that I won’t feel great about it some days – but I try not to give myself a hard time for it.  Personally, the time isn’t right for finding out if I have HD or not.  I know I can go for a Genetic Test to find out if I’ve inherited the faulty gene or not.  I don’t want to know what the future holds for me just yet.  Everyone is different in their views, but I’ll hold off for now.  I was a million percent certain I was going to find out after Mum told us, but over time and with support, my feelings have changed.  It isn’t for me right now.  I’ll wait to see how the clinical research trials go first.     

If you’re thinking about telling your children about HD, just be honest about it.  Everyone has a different initial reaction, so don’t beat yourself up if they shut down at first – that’s how I felt and I think it’s quite normal.  If you are a young person and you’re not involved with SHAYP I’d say to give it a go, try to be open about getting in touch.  It’s a scary thing to really admit how you are feeling, but I can’t put into words just how much reaching out to SHA and SHAYP has helped me and my family.