A young Fermanagh woman who has been diagnosed with a rare blood cancer says the support of her local community “feels amazing” as they organise a variety concert to raise money for a charity close to her heart.

In September, 2021, Orlagh Goodwin (21) from Lisbellaw was diagnosed with Essential Thrombocythemia – a rare type of blood cancer categorised as a Myeloproliferative Neoplasm (MPN).

Talking about her diagnosis, Orlagh explained that she was actually in the process of obtaining an endometriosis diagnosis when it was flagged that there was something not right with her blood test results.

“The only way to diagnose endometriosis is after surgery. In March, 2021, I was scheduled for surgery so I had a pre-operation appointment scheduled, but when my bloods came back, they just weren’t right,” she said.

“So I was referred back to my GP and then I got referred to the haematology clinic in Belfast.

“They did blood tests and found that my platelets were really high.

“Then I got a bone marrow biopsy, and an ultrasound of my spleen done. The results took about six weeks to come back,” she explained, noting that on receiving her results, she was diagnosed with Essential Thrombocythemia (ET).

“All the symptoms I’d been having started to make sense because I’ve always had really itchy legs, headaches, pins and needles, bone pain and I just feel really tired,” she said, explaining that these are all symptoms associated with ET.

“The main thing for me is the tiredness, but my friends and family know, so if I say I’m just not up for doing something, it’s completely fine, but it doesn’t really happen too often.

“I’m pretty able to just live my normal life so I’m really lucky,” said Orlagh, who is currently working as a teacher in Milan.

For her treatment, Orlagh explained that she has to take an aspirin every day to help prevent blood clots.

“With the platelets, the risk is you can have a blood clot but because I’m young, I don’t smoke and I’m very active, it’s not really a risk but it’s just like a preventive measure.

“Then I have quarterly reviews in Belfast City, where they just check that everything’s okay.”

Following her diagnosis, Orlagh found support and comfort from MPN Voice, a charity that provides accurate information and support.

“Whenever I got diagnosed, I was handed a leaflet for MPN Voice and everything just made so much sense,” she said, explaining that the charity also has a website with a blog featuring young people like herself who have MPNs.

“It made me feel like I wasn’t alone, because ET is typically diagnosed in [the] over-60s [age group].

“It was really useful to have that information there,” she added.

Last year, Orlagh raised funds and awareness for MPN Voice by completing a half marathon.

This year, her local community in the Lisbellaw area, led by Marie McKenna, are aiming to raise money for the charity by organising a Charity Variety Concert on Friday, April 14 at 8pm in Cavanacarragh Hall, Lisbellaw.

“It just feels amazing to have the support of people behind you because when you do get diagnosed with something that is rare, you do feel quite isolated, but it’s really helped,” said Orlagh, grateful for the community support of a charity that is so close to her heart.

The Charity Variety Concert will feature talented local singers, bands and dancers. Additionally there will be a raffle and auction on the night.

Tickets can be pre-booked or purchased at the door on the night. All proceeds from the event will go towards MPN Voice.

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