Tag Archives: Vascern

HHT Kids

This is not just another blog post about HHT. This is the M&S blog post of HHT because things are about to change. Here come the kids! 

July 2020 has been transformative. For 2 years we, as a family have come to terms with a staggering diagnosis. HHT is an incurable, hereditary disease, which can be fatal. Having a personal diagnosis can be very frightening. Having two of your three children, your dad and your brother also diagnosed, all in one go, is off the scale.

You can read our full HHT story here.

It’s time to make a change. HHT is not widely recognised nor represented in the UK. There are no specialist treatment centres and trying to get your hands on up to date advice, let alone treatment, can take months and months.

Here’s what I’m going to do.

What

I’m going to launch HHT Kids. Primarily a website, HHT Kids will become the go-to platform for children, young people, and their families looking to access quality, medical-backed information, support, and a sense of belonging.

How

Having already established connections with HHT Italy, HHT Ireland, Cure HHT, Alder Hey Children’s Hospital, Great Ormond Street Hospital, and Boston Children’s Hospital VAC Centre, I will curate factual, medical-approved information and guidance for free digital access.

The website will offer information about the diagnosis and treatment of the condition in multiple formats. I would like to see walk and talk videos from clinicians to show children and their families what happens when they go to an HHT appointment/Genomics/MRI Imaging/ Phlebotomy etc.

The website will also feature case studies. Kids, writing, or creating unique art to illustrate their HHT symptoms, in their own way.

The website will feature important information packs for parents, caregivers, schools, nurseries, and community groups. This information will help those outside the family bubble to understand the HHT diagnosis and coping mechanisms.

The website will feature additional information which HHT sufferers can personalise to help others understand how they cope with their symptoms. ‘My Friend Has HHT’ and easy to complete, downloadable school packs, which families can pass on to school, will prove to be invaluable.

The website will offer practical advice from people with HHT. Tips on how to pack for travelling, competing in sports, what happens if your nose bleeds in the middle of an exam/at the cinema/while swimming, etc.

Developing relationships with amazing artists has enabled me to begin planning different ways of reaching young people with HHT. Thanks to Andy Reilly, Brian Denham, and Wedge Collective, together I am positive we can actively engage HHT patients with art therapy, creative challenges, and printed deliverables.

This will be the first initiative to acknowledge how important positive mental health can aid HHT daily life.

The HHT Kids website will feature a blog where users will be encouraged to contribute, along with updates from our amazing partners in medicine and genomics and our European partners.

There are no specialist centres in the UK. This isn’t a national charity nor is there any real understanding among health care professionals outside ENT or vascular departments.

There is currently no cure for HHT. I firmly believe it is vital the voices of HHT children and young people are heard and they are actively engaged with education and research which could ultimately save lives.

The wheels are in motion. Follow @hht_kids on Instagram to find out more. If you’d like to be involved with the project, please email: katereillyjames@gmail.com 

 

Tagged , , , , , , , , , ,

Summer Loving

It’s officially July. This makes me happy for many reasons. A fresh start on my Everton calendar (oh hi Tom & Dom), a fresh start in my diary and it feels like summer again, which to me, means great music and good times. 

I’ve just updated the Mixtape section of the blog with 31 of my favourite tunes for the month ahead. As usual, it’s a real mixed bag in there. Everything from Beyonce to Al Green, Doves, Nick Ellis, Sinead Harnett, Earth Wind and Fire, and the King himself. Give it a listen here and send over any new music recommendations to katereillyjames@gmail.com.

Elsewhere, it’s set to be a busy month. I’ve just had a second art commission confirmed, which I’m mega excited about, more on that soon. Having just gotten into the swing of things in my new job, I’m finding managing working from home difficult.

The kids are home all day and crave structure and while I’m learning all kinds of medical terminology and working out marketing strategy, they’ve been spending way too much time on their ipads. Back to homeschool planning and prep for me!

We discovered the most awesome Nintendo Switch game earlier today. Untitled Goose Game is bloody hilarious. You play a goose, let loose on a local village and the aim of the game is to be as annoying as possible at all times.

There’s a dedicated honk button and your to-do list consists of tasks such as ‘grab a pint glass and chuck it in the canal’ or ‘lock the little boy in the phone booth’. Honestly, I’ve howled laughing playing it with my very impressionable 5-year-old. I was slightly mortified when he asked me what a phone booth is?! God, I’m so old. Check out Untitled Goose Game here.

Absolutely chuffed for the Toffees today (COYB!) and a home 2-1 win against Leicester and our first penalty of the season, at Goodison. Still not loving the fake crowd noise but a win is a win! Bring on Spurs on Monday.

Had white chocolate Coco Pops for dinner (thanks again to @Kelloggs for the fab nutrition advice for HHT patients) while emailing the European co-chair of the VASCERN HHT group for some advice about setting up HHT Kids on Instagram. If you don’t already know my HHT story and why it’s so important to me to raise awareness of this rare, vascular disease, you can get the low down here.

So after a 3 mile, 9pm walk with the little ones, I’ve blitzed the house, prepped homeschool for tomorrow (for me and them), and flopped into bed to get my first blog of July done – only to realise it’s already the 2nd…bugger!

Happy July Everyone, hope it’s a cracker for you.

 

Tagged , , , , , , , , , , , , , , , , , , , , ,