Announcing a new monthly blog dedicated to young people living with MPNs

[Mazcd]

Are you a young MPN patient?

Alice, a 26 year old with ET, is now writing a monthly blog dedicated to young people and MPNs, she will be writing about her own personal experience and journey of being diagnosed with ET, together with some of the top tips she has learnt along the way to live with ET.

She will have a blog devoted to managing symptoms at school and university and another on the benefits of a Mediterranean style, anti-inflammatory diet. She will also be collating helpful resources and articles that address the young patient experience and she hopes to connect with and share the stories of fellow young patients and conduct Q&As with clinicians and other healthcare professionals about their experiences of caring for, treating, supporting and researching young MPN patients.

Alice says “we youngsters are a rare and special breed in the MPN community, but although small in number, we have plenty of stories, insights and advice to share, the more our voices are amplified, the closer we’ll get to understanding MPNs in all their diversity and I therefore hope that my blogs will play just a very small part in helping to shine a spotlight on young people and MPNs.”

Alice’s blogs will be published monthly, on the MPN Voice website, in the About Us section. In her first blog, which you can read here mpnvoice.org.uk/about-us/yo...

Alice takes you on a whistle-stop tour of her journey thus far.

We hope that you enjoy reading it and her future blogs. If you would like to send Alice any feedback or have any questions please email: [e-mail]

We would like to thank Alice for sharing her experiences in her blogs and for supporting the young MPN community.

[Fizzydog]

A fantastic blog thank you for sharing this Maz so interesting to read about eye blurred vision I get this a lot & was told it’s nothing to do with my Essential Thrombocythaemia so it’s so reassuring to know that it is indeed a symptom. Claire xx

[Thenemesis-ET_CALR in reply to Fizzydog]

Me too. So scary at first especially with existing eye problems then thinking you are going blind. Not often either thankfully but was always told optical migraines or bad head aches and too Not stress, cool down, water etc.

Definitely a symptom now when I look back. Another sign showing how long I've been living with et for. Like you, looking back at past blood tests disappointed at the high platelet readings an no follow through.

Excellent blog, thank you for sharing and look forward to more.

Take care

[Alice_22 in reply to Thenemesis-ET_CALR]

Hello. Thank you so much for taking the time to read my first blog post - I really appreciate it. It’s fascinating to hear you’ve had a very similar experience to me. Very much hope it filters down to more GPs, so they can help anyone who’s in our shoes too. All the best, Alice

[Alice_22 in reply to Fizzydog]

Hi Claire. Thank you so much for taking the time to read my first blog post - I really appreciate it. It’s always so reassuring to hear about patients who experience similar symptoms and I hope your blurred vision improves. All the best, Alice

[Fizzydog in reply to Alice_22]

It’s a fantastic blog & I look forward to reading more of them in the future. Thank you so much for sharing your experience with us all.

Best wishes

Claire

[christiev]

Brilliant Maz - thanks so much.

[Alice_22 in reply to christiev]

Thank you for taking the time to read my first blog post - I really appreciate it. All the best, Alice

[Susana7]

Excellent blog from Alice! Although I was only diagnosed at 50, I suffered migraines with auras since my 20s - which disappeared after starting on daily aspirin following my PV diagnosis. And it was also a young GP that pointed out the raised platelets. All the best to Alice xxx

[Alice_22 in reply to Susana7]

Hi Susana. Thank you so much for taking the time to read my first blog post - I really appreciate it. It’s so interesting to hear you had a near identical experience to me - and more importantly, I am thrilled to hear your migraines disappeared with aspirin. Long may it stay that way. All the very best, Alice

[Tintins]

Thank you for taking the time to create this blog. I was diagnosed with ET at 50 and remember the shock and realisation of living with a chronic disease was difficult. There are different challenges if diagnosed at a young age 20s/30s and your work will help to support enormously .

[Alice_22 in reply to Tintins]

Hello. Thank you so much for taking the time to read my first blog post and for your very kind words. It means a lot. All the best, Alice

[MAP44]

Thank you for posting this new addition to MPN voice. This effects everyone at different ages and it is fantastic to create support for all ages. Thank you Alice for all your honesty and openness. Best of health to you in the future.

[Alice_22 in reply to MAP44]

Thank you so much for reading my first post and for your kind words. It’s really lovely to hear that. Very best of health to you too.

[Joetcalr]

Great blog Alice, so articulate. Re painful periods, I was on a trial of fish oil for them, totally worked - take 8 (maybe 6 if you're small) large capsules a day for as many months as it takes the pains to no longer occur, then cut down on the numbers. You'll start to feel like a fish, but worth it! All the best Jo

[Alice_22 in reply to Joetcalr]

Hello Jo. Thank you so much for your kind words about my blog - I really appreciate you taking the time to read it and send a message. Thank you for your fish oil advice too! That’s very interesting. Which type of fish oil did you take? And do you remember what dose each large capsule was? All the very best, Alice

[Joetcalr in reply to Alice_22]

Sorry Alice, I can't remember what type of fish oil was on the original trial, but probably cod liver. For a vegan worth trying linseed/flax. Good luck Jo

[Alice_22 in reply to Joetcalr]

Thanks, Jo - much appreciated!

[Leighcox85]

This is an amazing idea I was diagnosed with primary mylefibrosis at 24 and found it to be lonely as a new mum and having a condition that changed my life drastically I found very few even knew of mf amd the other patients are often a lot older than me so don’t have the same stresses I do (small children) I think this will be very helpful can’t wait read it

[Alice_22 in reply to Leighcox85]

Hello. Thank you so much for your kind message and sharing your story. I hope this blog will play a small role in helping younger MPN patients like us feel less isolated. You sound like an amazing person juggling motherhood with MF - wishing you the very best, Alice

[mhos61]

This is great idea Alice, and so well articulated too.

I’m always saddened when I hear of young people being diagnosed with an MPN; I’m also surprised at how often that seems to be, and how isolated they must feel.

Your blog will offer young patients that vital sense of connection and peer support. Hope you find it a cathartic process too.

Good luck Mary Xx

[Alice_22 in reply to mhos61]

Hi Mary. Thank you so much for reading my first blog post and your lovely message. I really appreciate your kind words. It’s been wonderful to hear from fellow patients of all ages and just shows what an amazing MPN community we have. My next post is a Q&A with my MPN “buddy”, so do keep an eye out for that next month! Wishing you the very best, Alice