Saving lives through social media

Vithiya Alphons tells James Cracknell about her battle with cancer

Vithiya Alphons

Vithiya Alphons grew up in Walthamstow and is now studying optometry in Cardiff

Vithiya Alphons almost did not go to see a doctor when she started feeling unwell in October 2015.

She was vomiting, had a fever, and felt a pain in her leg, but was not keen on GP appointments. Yet, without such an appointment, the student from Billet Road in Walthamstow would likely now be dead.

It was in a dream that Vithiya visualised being in a wheelchair, and this led her to go to her local doctors’ surgery and find out what was wrong.

“I got sent for a blood test and was diagnosed the same day,” she explains. “They said I had leukemia, a type of cancer. I started crying straight away. I didn’t know how to tell my parents, I realised there was nothing I could do, but I was just worried about how my family would react.

“I was studying in Cardiff and my parents arrived the next morning to see me in hospital. My mum broke down crying. I actually felt okay, I was more upset for my parents. At that point I didn’t know what I was going to have to go through.”

Vithiya was in the final year of a degree in optometry, but had to put her studies on hold. “After I had my bone marrow biopsy the doctors said I was lucky to be alive, they said if I had left it two days later to see the doctor my parents would be arranging my funeral.”

The 25-year-old was immediately put on a course of chemotherapy. “I reacted really badly to it. I was vomiting, my hair fell out, and I had diarrhoea. I was being sick six or seven times a day and had really high temperatures. Chemo kills the cancer cells but it also kills a lot of good cells as well.

“I had to have four rounds of it, after which I went into remission, but because there was still such a high risk of the cancer coming back the doctors said I had to have a stem cell transplant.”

Vithiya Alphons

Vithiya Alphons in hospital during her treatment for leukemia

Stem cell donors are most commonly found from family members, but none of Vithiya’s relatives were a perfect match. Instead her best hope would be if doctors found someone else who, like her, was of Sri Lankan Tamil descent.

Unfortunately, just 13 percent of the nationwide stem cell donor list is from a black or minority ethnic (BAME) background. Still without a match, Vithiya set about encouraging more people to sign up to the donor list.

“I knew it would be difficult to find a match because of my ethnicity,” said Vithiya. “Initially they tested my brother and thought he could be a back-up, but it turned out he wasn’t a match at all.

“There are ten genetic factors that they need to match you up with someone, and the best match shares at least nine of these factors with you. Without these factors there’s an increasing chance the body might reject the transplant, or of the cancer coming back.

“I told my friends about it and I put up a Facebook post to see what the response would be. So many people got back to me. My friends got in touch with [the cancer charity] Anthony Nolan and we arranged some donation drives, to get people to sign up to the stem cell register.

“We held drives in Wembley, Harrow, Southall, Luton, and they were attended by about 4,000 people.”

But Vithiya’s chances were still slim – only one in 125,000 people are a perfect match. The number of Sri Lankan Tamils living in England is only around 25,000.

“I still had hope that there would be someone out there. But I knew that even if I didn’t find a match for me it would still help other people in my situation, because there’d be more on the list.

“Once we realised we weren’t going to find a match, we did the transplant with my mum. She is fit and healthy and there is a much better chance of a transplant with a parent being successful, even if she is not a perfect match.”

The transplant took place on 19th May this year, and Vithiya can now only wait to see if the cancer returns. “Every day I feel grateful to god,” she says.

About 2,000 people in the UK need a stem cell transplant from a stranger every year. Altogether, as a result of Vithiya’s campaign, 10,000 more people joined the donor register, nearly half of whom were from BAME backgrounds. Three cancer patients found matches that they otherwise wouldn’t have found.

Vithya said: “It’s a really big thing, that because of my campaign more people have been able to find matches. One person even messaged me to thank me.

“I hope that my campaign will go on to save more lives in the future.”

Only 60 percent of stem cell transplant recipients receive the best match, but this drops dramatically to around 20 percent for people from BAME backgrounds.

The success of Vithya’s campaign has led to her being shortlisted for ‘BAME Advocate of the Year’ at the Anthony Nolan Supporter Awards. Henny Braund, Anthony Nolan’s chief executive, described Vithiya’s “incredible” campaign as “invaluable in recruiting BAME donors”.

Vithiya, who has now resumed her studies in Cardiff, said: “I am really honoured.”


Find out more about becoming a stem cell donor:

Visit anthonynolan.org

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