Last month, Charlotte, Jamie, and Brad ran the London Marathon in support of MPN Voice. These three amazing runners raised more than £8,000 and if you scroll back through the charity’s recent social media posts, you’ll see photos of each of them proudly wearing their medals over MPN Voice t-shirts.
This incredible feat is just one example, among many, of supporters getting involved in fundraising activities to raise awareness about, and funds, for people affected by MPNs.
As a patient-led organisation, MPN Voice relies on the generous support of people in the community to continue its vital work and I am consistently blown away by the fantastic initiatives that take place each year.
In 2022 alone, fundraising events included sponsored swims, a month-long yoga challenge, skydives, abseils… The list goes on!
As a keen golfer, I loved reading about Steve, the Senior Captain at Cumberwell Park Golf Club in Wiltshire, who raised funds for and awareness about MPN Voice at their Senior Open last summer.
You may know that MPN Voice spearheaded a “walk to support” initiative in September for Blood Cancer Awareness Month, which had people taking part in the US, Australia, Europe, as well as the UK – with and without their pets!
However, it is important to recognise that it is not always possible for MPN patients to take part in physical exercise challenges, and fundraising activities are certainly not limited to the sporting arena.
Other events from last year included music and choir concerts, which were a tremendous success. I still look back fondly on the traditional Irish music concert organised by Maëlla in September 2020 during the height of the pandemic – this virtual music evening was really joyful and uplifting, and showcased the amazing talents of many local performers.
2022 also saw MPN Voice launch its healthy recipe book at the Living With MPNs day in November; a resource filled with delicious recipes submitted by people in the community and designed to start a conversation about nutrition, inflammation, and MPNs.
And finally, only this week, the charity’s social media has spotlighted a ‘bits n bobs’ charity stall and honesty box created by Nicola in support of MPN Voice; a brilliant idea which has raised almost £500!
This roll call of wonderful challenges, events, and initiatives shows that no fundraising idea is too big or too small.
Every little helps and goes a long way to supporting MPN Voice.
This introduction serves to introduce one of our amazing young fundraisers, Orlagh, who is 22, has ET, and kindly joins me in this month’s blog post.
Orlagh shares her story of being diagnosed and living with an MPN, and tells us about some of the inspiring fundraising activities she has recently been involved in.
The accompanying photo depicts Orlagh proudly holding her medal after completing the Manchester Half Marathon in October; an awesome achievement which you’ll hear more about below.
I hope you enjoy reading our Q&A together.
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A: Hi Orlagh. Thank you so much for joining me on the young patient blog. Tell us a bit about yourself…
O: Hi Alice, thank you so much for having me! I am from Fermanagh in Northern Ireland and currently living in Milan, while working as a teacher. I have recently turned 22 and I enjoy travelling and experiencing different cultures. I am looking forward to my European interrailing trip in the summer, where I will be visiting 6 different countries. I also plan to move to Qatar in August with my best friend, where I will continue my teaching career for 2 years. This will be alongside studying an online part-time Masters degree in Teaching English as a Second Language.
A: How old were you when you were diagnosed with ET?
O: I was 20 years old when I was diagnosed with ET.
A: Can you describe your journey to diagnosis?
O: Since I was 14, I have suffered with extremely painful period cramps and back pain and had been referred to the gynaecology waiting list in Northern Ireland through my GP. The gynaecology list in Northern Ireland is extremely long and it took up to 6 years to receive an appointment with a consultant. However, as I had moved to Liverpool for university and had changed my GP while living there, I was unable to take this appointment as I was no longer a patient in Northern Ireland.
I was still suffering 6 years later and was getting increasingly frustrated with my symptoms as they were impacting my daily life as a student teacher. Then myself and my parents decided to get these symptoms checked privately in Kingsbridge Private Hospital Belfast.
Following initial appointments, I was scheduled for an exploratory laparoscopy for suspected endometriosis in April 2021. However during my pre op check, there was an issue with the platelet levels in my bloods.
I was referred back to my GP and put on the Haematology waiting list in Northern Ireland because at this point I had moved back home due to the COVID-19 pandemic. After 4 weeks, I had my initial consultation and I was scheduled for an ultrasound of my spleen and a bone marrow biopsy for a month later – July 2021.
I was extremely nervous for the bone marrow biopsy and was even looking up the procedure the night before! In the end it wasn’t as bad as I thought it would be, it actually felt like a vacuum in my back!
I had a follow-up appointment with my results in September 2021 – 8 weeks after my BMB and spleen ultrasound. The consultant explained to me that my platelets were still significantly high – around 1200 – and my spleen was quite enlarged as a result. In my BMB results, I tested negative for JAK-2 and CALR mutations.
I was diagnosed with Essential Thrombocythemia during this appointment. Hearing ET and blood cancer in the same sentence was surreal. I just couldn’t wrap my head around it. I also didn’t understand the fact that I had no mutations but still had ET, at that moment in time it just didn’t make any sense to me. I was questioning, ‘How is it possible?’ and ‘What has caused this?’.
My consultant was absolutely brilliant explaining everything and really helped to reassure me. I left the hospital that day in a daze, I just kept trying to push it to the back of my mind so I wouldn’t have to think about it. The leaflets from MPN Voice provided by my consultant were vital, giving more information at this point of my diagnosis.
A: Do you experience any symptoms? If so, how do you manage them?
O: Yes I do experience symptoms. In the first six months of my diagnosis I suffered with really bad headaches, however luckily these are not an issue at this point of my ET journey.
At the moment the biggest symptom I suffer from is fatigue. As an Early Years Teacher, I am on my feet all day, 5 days a week. I absolutely love my job and always do it to the best of my ability, not letting the fatigue show. This however has impacted my social life, where I have made plans with friends and I have to let them down on the day. Or I go and I feel fatigued and have to go home to rest. My work colleagues, friends and family are very understanding about this.
Other symptoms I suffer with include itchiness and bone pain. For this I use peppermint oil wherever it is itchy, usually my legs! For bone pain, I would occasionally take ibuprofen but it hasn’t been a frequent symptom, luckily.
A: Do you take any medication for ET and if so, what impact has it had (i.e. in reducing symptoms, bringing down your blood counts…)?
O: I take aspirin daily to prevent any potential blood clots. As I am young and don’t smoke, my consultant explained that my risk of a clot is low, which I am grateful for.
A: Have you made any lifestyle changes (e.g. exercise, diet, reducing stress) in response to being diagnosed with an MPN?
O: Yes, I have made lifestyle changes.
In terms of exercise I am a very active person in my daily life. I played Gaelic football before my diagnosis and I continue to play it now. I have found running is a useful way to reduce stress and this led to my first half marathon in aid of MPN Voice!
Since I am no longer a student, my stress levels have significantly reduced and with this my headaches have subsided, which is amazing.
A: How did it feel being diagnosed with ET at a young age?
O: It felt terrifying to be diagnosed at a young age. Additionally it felt quite alienating as when I researched more information about ET following my diagnosis, the majority of the information focussed upon ET in older patients. I didn’t really know how to accept my diagnosis and I tried to convince myself that it was no big deal. I threw myself into my university work and my social life in Liverpool, trying to ignore the reality of it.
However over the past year and a half, I have come to terms with my diagnosis through my own research and conversations with other young MPN patients. These conversations were so vital as it reminded me that I was not alone and I would be okay.
My diagnosis also has emphasised that life is short and I need to take every opportunity available, so I made the decision to move to Italy, choosing a job in Milan over Liverpool. This was a really important step for myself as I had negative feelings surrounding Liverpool from the first few months following my diagnosis. I am incredibly fortunate that my symptoms are manageable so I can take these amazing opportunities in Milan and Qatar.
A: You’ve done some amazing fundraising activities for MPN Voice… Tell us about what you’ve been up to!
O: In May 2022, my brother, Daniel ran the Leeds Half Marathon in aid of MPN Voice and I ran the Manchester Half Marathon in October 2022 raising around £5,000! I was originally meant to run the Leeds Half Marathon but I sprained my ankle over the weekend of my 21st birthday!
My local community recently organised a Charity Variety Concert with an auction and raffle to fundraise for MPN Voice. It was a great night and it meant so much to have the support of my local community, I cannot thank them enough. The concert raised around £5,000!
A: Incredible. What motivated you to get involved in fundraising? And how have you found the experience?
O: I was inspired to partake in a half marathon by my brother Daniel, he is a very keen runner and I decided to achieve this goal in 2022. I also wanted to give back to MPN Voice and support them with research and advocacy on behalf of MPN patients.
Setting myself the goal of partaking in a half marathon for such a worthy cause motivated myself to change my lifestyle to manage my symptoms. After I shared my diagnosis on social media to raise awareness and to encourage donations, I got a flood of supportive messages from friends and strangers alike. I felt empowered to be an advocate for MPNs and to promote awareness of these rare blood cancers.
A: Finally, if you had to give one piece of advice to a fellow young MPN patient, what would it be?
O: Listen to your body and be aware of your symptoms. I thought my itchiness was an allergy to fake tan and my tiredness a consequence of university lifestyle!
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Huge thanks to Orlagh for taking the time to participate in this month’s Q&A blog and for sharing her inspirational story.
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
If you’d like to get involved in fundraising for MPN Voice, see Fundraise – MPN Voice or contact the MPN Voice Fundraising Team by emailing fundraising@mpnvoice.org.uk
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
