Hello. My name’s Alice. I’m 26 and I have Essential Thrombocythaemia. Over the next year, I’ll be publishing monthly blog posts here on the MPN Voice website about what it’s like to be a young person with an MPN.
I’ll be writing about my personal experience and journey of being diagnosed with an MPN, together with some of the top tips I’ve learnt about living with ET along the way. I’ll have a blog post devoted to managing symptoms at school and university. Another on the benefits of a Mediterranean-style, anti-inflammatory diet. I’ll be collating helpful resources and articles that address the young patient experience. I hope 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.
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 this blog will play just a very small part in helping to shine a spotlight on young people and MPNs.
This first instalment will take you on a whistle-stop tour through my journey thus far. There are already some fantastic patient stories written by Jennie, Gina, and Emily to name only a few, which can all be read here: Real Stories – MPN Voice. I therefore join them in sharing my experience and kick-starting this new young patient blog.
I was diagnosed with an MPN the day after my 21st birthday.
Initially, there was uncertainty about which type of MPN I had. The first haematologist I saw leaned towards PV due to a number of blurred indicators in my blood counts. But a red blood cell mass test – no, I hadn’t heard of it either! – with a second haematologist confirmed that I actually had ET. Although this is the official point at which my MPN journey began, it likely stretches back to when I was 9 years old.
This is the age when I started to develop migraines with aura.
I can still vividly remember my first migraine attack, which started while I was watching Catherine Tate on TV, trying to learn the lines of her sketches by watching subtitles at the bottom of the screen. Suddenly I couldn’t read half the words, which was my frightening introduction to visual auras. I remember a wave of panic washing over me and the desperate attempt to wash my eye in the sink thinking there was something in it. Thereafter followed one-sided head pain, sickness, and extreme light sensitivity. A familiar sequence of events that would come to plague the next 12 years of my life.
I had migraines in the classroom, on the side of hockey pitches, and in the dining hall. My parents received frequent calls from the school nurse to rush back from work and take me home. I had to stop doing sport because cardiovascular exercise became an unmistakable trigger. That meant no more running, netball, tennis, hockey, or rounders. I drank gallons of water. Ate frequent snacks to keep my blood sugar levels up. Cut out chocolate, citrus fruits, cheese, and other ‘classic’ migraine foods. Took up yoga. And adhered to a regular sleep pattern.
Despite this, I struggled to get up for school in the morning due to fatigue and what I then called “heavy legs”. I was constantly thirsty. I sweated a lot. I had incredibly painful periods. And I still experienced debilitating and unpredictable migraine attacks. We saw GPs and neurologists, and immersed ourselves fully in the migraine patient community. We attended talks, watched videos, and read numerous books. But they persisted in being a constant and traumatic presence throughout school and the first two years of university.
Although an enormous challenge, going to university was paradoxically the best thing that ever happened.
I had reached the point where I could no longer climb three flights of stairs to my morning lecture theatre without becoming desperately thirsty and experiencing an intense pounding in my eyes that pulsated along with my heartbeat. The reward for this struggle? A migraine with aura as soon as I reached the top. Friends would therefore have to guide me, partially sighted, back down the staircase to the ground floor and wait until my dad arrived.
I went to see a GP called Nick in my new university town who listened afresh to my story and string of symptoms. He did a full sweep of blood tests which revealed an elevated platelet count in the 500-600 range and two further full blood counts confirmed consistently high platelets.
I remember receiving a call on the concrete steps of the university library asking me to come in for a “JAK2 test”. I had no idea what this meant and happily went along for another blood test. Sitting at my desk revising for my exams, I took a second call from the practice nurse who said she was very sorry to say the test result had come back positive.
I remember thanking her and saying there was no need to apologise. For starters, I had no idea what “JAK2” meant. I asked if it might have anything to do my migraines, which was, after all, the reason I’d visited the GP in the first place. She wasn’t sure.
Over the next couple of weeks, my dad fielded calls from the practice while I sat my exams and attended a Christmas meal with friends ahead of my 21st birthday. In the midst of it all, we ended up at the out of hours clinic as my toes slowly turned a deep shade of purple. I can picture the moment I told the on-call GP I’d just received a positive JAK2 result and asked whether my discoloured and unhappy looking toes could be related. The answer was “no”. It was only on arriving home after my exams that I learnt I had a haematology appointment scheduled for the day after my birthday.
It was at this appointment that I was told I had a rare type of blood cancer.
I remember the room spinning and looking in disbelief at the consultant. Again, I asked whether migraines with aura were anything to do with having an MPN and the answer we received was “no”.
On taking a daily dose of Clopidogrel (an alternative to baby Aspirin), however, I went from having frequent, debilitating migraine attacks to having no migraines at all.
I can’t emphasise enough how life changing that was and has been for me and my family. Anyone who’s a life-long sufferer of migraines will know that you’ll do anything to try and prevent them.
A few months later, I made my way to Guy’s and St Thomas’ hospital in London to clarify my MPN diagnosis. I was still stuck in limbo between PV and ET, deemed “unclassified” on the multiple letters that landed in our post box. A red blood cell mass test in the intriguingly named “nuclear medicine” department provided the answer. I had ET.
What’s more, Professor Harrison, who I continue to see today, told me that migraines were in fact a symptom of MPNs, and that she had other patients in her clinic who, like me, experienced migraines with aura. By that stage, I’d been reading as much information as I could get my hands on. A quick glance through the MPN Voice website reveals “persistent or repeated headaches” and “vision disturbances or silent migraines” to be two signs and symptoms of ET.
There in black and white was the answer. Overnight, migraines went from being the ‘main event’ to a symptom of having an MPN.
5 years on from my diagnosis, I remain on Clopidogrel and “watch and wait”. Although discovering ET has been life-changing on the migraine-front, I continue to have significant symptoms. I struggle daily with floaters and visual lights in my eyes. I still experience fatigue and leg pain, and very painful periods. My hands and feet are in a near permanent state of deep freeze, and more recently, I’ve been experiencing neuropathic pain in my head. Every few months, I methodically type my blood results into a table and quietly note my platelets creeping upwards year on year.
However, I have graduated from university. I have since completed a Masters and just submitted my PhD. I hosted a show on the student radio station and regularly listen to live radio and podcasts. I love playing and watching golf, and following all the professionals on social media. I love reading books – particularly crime fiction! – and can’t think of anything better than musical theatre. If there’s a new episode of Vera on TV, I’ll be watching it. If Hairspray’s coming to the local stage, my tickets will be booked. And if Jodie Comer’s starring in a new series, I’ll have told you about it. Probably, more than once.
That is to say, ET plays a big part in my life, but it doesn’t totally define it.
There are good days and there are less good days. It’s been fantastic to meet fellow MPN patients, and hear their stories and swap tips on managing symptoms. If you haven’t yet attended an MPN Voice patient forum, I can’t recommend them highly enough. They are a brilliant space of conversation and dialogue with other patients and clinicians who talk through the nuts and bolts of MPNs, as well as the latest research and drug trials. Similarly, if you’re feeling isolated or confused, the MPN Voice buddy system is here to help and will pair you up with a like-minded patient with whom you can share your journeys together.
My family and I seem to learn new things about ET every day. We’ve come to realise that no two patients or patient experiences are the same. There is no one size fits all with MPNs. A significant light bulb moment has been learning about the role of inflammatory cytokines, rather than blood counts, in driving our random and sometimes never-ending symptoms. We’ve come to realise that the printed sheet documenting my latest levels of platelets and red and white blood cells is not always an accurate or clear reflection of how I am feeling. Discovering these little things over time has taught me that the more we share and connect with each other, the more we’ll learn about this rare and confusing disease.
I can’t thank Nick, my university GP on the east coast of Scotland, enough for spotting my MPN. It is only now that I look back on blood tests taken when I was younger and see the slightly raised platelet counts that I wonder what life would have been like if it had been detected earlier. It seems almost unbelievable that a platelet count only just outside the ‘normal range’ caused so much havoc and upset. I sometimes feel sad and frustrated that it wasn’t picked up when I was at school, and more importantly, that someone else out there could be in the same situation, struggling with migraines like I was.
But in hindsight, the things I did to try and manage my migraines – eating healthily, keeping to a regular sleep pattern, practising yoga, and so on – were likely beneficial for my MPN too. It’s no use trying to turn back the clock, and instead I hope that sharing my story might help or resonate with someone as they navigate, and try to make sense of, their own MPN journey.
Stay tuned for Alice’s blog post next month when she’ll be doing a Q&A with another young MPN patient.