This determined student has been diagnosed with an ultra-rare form of blood cancer - but she’s adamant she doesn’t need your pity or sorrow.
And to prove it, Orlagh Goodwin is set to run a half marathon to raise funds for a charity that supports others with her condition.
Orlagh, a student at Liverpool Hope University, has ‘essential thrombocythemia’, or ‘ET’, a type of cancer that causes a high number of blood cells called platelets to form in her body.
It’s one of a group of conditions called ‘myeloproliferative neoplasms’, or MPN, and is most likely caused by a genetic fault that occurs over time.
There’s no cure, but for lots of people treatment to reduce the number of platelets can control ET for many years.
And Orlagh doesn’t just want to raise awareness of ET - something that affects around 1 in 1 million people worldwide - she also wants to reveal her battle just to get a diagnosis in the first place.
That’s largely due to the fact her main symptoms of fatigue, pins and needles, itchiness and headaches are indicative of so many other ailments.
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The 20-year-old, originally from County Fermanagh, Northern Ireland, reveals: “I’m not going to lie, I’ve had some mental breakdowns since being diagnosed.
“It’s also been really difficult because ET doesn’t fit into the typical ‘diagnosis, treatment, cure’ pattern of other cancers. Often people just don’t understand what it feels like to have an ET diagnosis.”
Orlagh’s journey began way back when she was 14. She struggled with her periods and was referred to a specialist with suspected endometriosis.
It was then, however, that she was hit with a waiting list of seven years, something she describes as a ‘nightmare’.
Four years later, she moved to Liverpool having still not been given an appointment and so her family opted to seek private treatment instead.
A laparoscopy followed in March 2021 - and Orlagh says her ‘bloods came back funny’, showing high levels of platelets, which set alarm bells ringing.
By April of 2021 she’d been referred to a haematology department at the Bridgewater Suite in Belfast City Hospital and - once again - doctors discovered her platelet levels were four times higher than they should have been. That confirmation led to a bone marrow analysis in the July of that year
Orlagh says: “No-one could tell me what was wrong with me. I tried to keep my mind occupied but you start to fear the worst and Googling things on the internet didn’t help, either.”
Once more, Orlagh had another agonising wait and it took until September of 2021 before she was given a definitive diagnosis - essential thrombocythemia.
She adds, tearfully: “They sat me down at the hospital in Belfast and said, ‘Your platelets are still the same. We’re going to assume it’s ET - you have all of the symptoms’.
“I think I froze, emotionally. I went and got lunch with my mum and tried to push it out of my head. But in the days that came afterwards, I started to realise, ‘I’ve just been told I’ve got a rare blood cancer’.
“I didn’t know what to think. I told my friends in Liverpool and they were so good, really rallying around me to support me.”
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(Orlagh, far right, playing for Hope's Gaelic football team)
Orlagh was handed a leaflet for MPN Voice, a vital charity that provides information, community and advocacy for rare blood cancer patients, their families and carers, and health care professionals.
For Orlagh, it was a crucial lifeline, helping her to connect with other people who are going through exactly the same thing. It’s through MPN Voice that she’s been able to meet fellow patients in nearby Manchester.
At the time, Orlagh wasn’t put on any treatment other than aspirin. It’s hoped the doctors have caught her ET early enough to be able to manage it effectively.
She may, however, need to undergo ‘Interferon’ treatment in the future, which is less intrusive than chemotherapy but can have similar side effects, including hair loss.
Orlagh recently took the decision to open-up about her diagnosis and even took to social media to tell her friends and family.
The response was overwhelmingly positive.
She says: “It was a tough decision to make. The morning before I posted it I was shaking with nerves. But as soon as I’d posted it, I just felt this great sense of relief.
“I don’t want people to pity me or to treat me any differently. I’m an active person. I play Gaelic Football for Liverpool Hope University, and I very much can continue to do so.
“I’m determined just to continue with my life.”
On the 8th May Orlagh and her brother Daniel, a doctor, will run the Leeds Half Marathon to raise money for MPN Voice.
Incredibly, she’s already raised almost £3,500. But there’s still time to donate - which you can do so by visiting her Just Giving page.
Meanwhile Orlagh says that if anyone reading this is experiencing similarly unexplained symptoms, don’t hesitate in seeking help.
She adds: “Go and advocate for yourself and get yourself looked after. And push for a diagnosis because it’s so important. It’s certainly something I struggled with.
“Even if you don’t want to tell your family and friends, MPN Voice has a ‘buddy service’ where they match you with someone who has been through the same experience.
“It might actually be easier talking to a complete stranger.”
Orlagh plans to finish her studies and push forward with her career plans to become a primary school teacher in Liverpool.