MPN Voice has launched a young patient network and on Sunday 2nd April we held our first virtual meeting!
It was a fantastic event, and we were thrilled to see so many young patients attending from the UK and around the world.
The main part of the meeting was a breakout session, facilitating discussion between smaller groups and offering young patients a chance to meet, chat, and share their experiences with others.
We were fortunate to be joined by leading clinicians who shared their insights and expertise, and members of the MPN Voice committee who helped to run and orchestrate the meeting.
It marked an exciting first step in getting the network off the ground.
The overall aim of the network is to bring together and support young people with MPNs. It’s designed to be a welcoming space where young patients can meet and connect with likeminded others, and receive information tailored to young patient experiences and challenges.
It emerges out of a recognition that being diagnosed with an MPN when you’re young can bring with it a unique set of questions, issues, and concerns.
So much of the literature on MPNs is directed towards older age groups due to an average age of diagnosis of 60 and above.
This statistic can be difficult to read when you’re in your teens, twenties, and thirties.
Indeed, many have shared feelings of isolation, anxiety, and confusion with me, questioning why we are so much younger than older counterparts in the patient community.
It was partly for this reason that I started writing the monthly blog.
When I was first diagnosed, I was desperate to read the stories and testimonies of any young people I could find online, and I therefore wanted to add my story to theirs, providing a resource on the MPN Voice website which newly diagnosed patients could find and turn to.
I’ve been really touched by those of you who’ve read the blog and taken the time to write in to MPN Voice. Receiving your emails and messages sparked the idea for the network, turning a growing list of contact details into a vibrant young patient community that could sit within the MPN Voice umbrella.
We have some great ideas already.
We’re hoping to hold a series of virtual meetings where young patients can meet and swap stories, challenges, and coping mechanisms.
We’re also hoping to hold a series of workshops on specific topics, such as treatment options, symptoms and lifestyle changes, fertility and family planning, mental health, and juggling a chronic illness with a career. These themed sessions will enable young patients to learn from leading health professionals and guest speakers.
At the moment, these are all set be online events to ensure that location isn’t a barrier to participation. However, face-to-face meetings are always valuable, and it would therefore be lovely to hold a few hybrid meetings where those who are willing and able to travel could attend in person.
We’re also looking to the future and thinking about a young patient forum, similar to the brilliant regional forums already run by MPN Voice but this time devoted to diagnosing and managing the disease in young patients.
Quite a few have said to me they’re reluctant to attend regional forums due to worries about being the only young face in the room; a stark visual reminder of being a minority within an already small patient community.
A forum dedicated to young patient experiences would offer a supportive counterpoint, enabling attendees to realise they’re not alone in this journey.
Already up and running is a Facebook group attached to the network, which is exclusively for young patients diagnosed with an MPN under the age of 40.
It’s designed to be a digital space where young people can meet and connect, share any worries or concerns, and chat with each other about what it’s like to live with an MPN.
It’s a moderated group, just like HealthUnlocked, so the charity keeps a watchful eye on the content being posted and retain the right to pull down any posts it deems inappropriate or problematic.
Similarly, when you request to join, you’re asked to complete a handful of questions about your diagnosis and age, and agree to the group’s rules around being respectful and considerate towards others.
This isn’t to ruin the fun of social media. It’s to ensure that everyone recognises the importance of creating a safe and supportive environment.
While we hope the Facebook group will prove a great source of support and information, it’s important to remember that it’s not a substitute for professional medical advice. If you have any concerns about your health, always seek the advice of your haematologist, nurse practitioner, or GP.
Social media has been a fantastic way for me to connect with fellow young patients thus far and hopefully this Facebook group will be a welcome addition to MPN Voice’s social media roster.
If you missed our first meeting, don’t worry! We’ll be holding plenty more events over the coming months, so please keep an eye out for any advertisements via the charity’s mailing list or social media platforms.
Finally, if you’d like to be involved in helping run the network, we’re looking for volunteers to join the steering committee and I’d love you to get in touch (see below)! We’re very open to new ideas and suggestions, and the committee is the perfect way to turn your proposals into reality.
I am hopeful that the network will fill an unmet need in the MPN patient community, connecting and supporting young people no matter their diagnosis or where they’re located in the world.
I look forward to meeting you soon.
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If you’d like to get in touch with Alice about this topic or any of her blog posts to date, you can contact her by email at: info@mpnvoice.org.uk
Similarly, if you’d like to volunteer to be part of the Young Patient Network steering committee, please email info@mpnvoice.org.uk and include your name, diagnosis, and location.
If you’d like to be part of the Young Patient Network group on Facebook, you can request to join by clicking this link: www.facebook.com/groups/mpnvoiceyoungpatientnetwork
If you missed the launch of our special MPN Voice Recipe Book, you can purchase a copy on Amazon here: The MPN Voice Recipe Book : Voice, MPN: Amazon.co.uk: Books
