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.
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.
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.
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.