Doctors said my sickle cell disease was growing pains
Ex-Corrie actress tells Gemma Calvert how she learned to live with a dangerous condition
I wasn’t aware what it was so I trained myself to push through the pain
At 13, former Coronation Street star Victoria Ekanoye was set on becoming a professional athlete – she excelled in the 100m sprint, netball, rounders and swimming at school.
“I did every sport going and wanted to be an athlete,” says Victoria, 38.
She trained four days a week despite frequent bouts of crippling leg pain and fatigue which she thought was just a result of being “so incredibly active”.
And it would be years before she found out she was so wrong.
“The pain was mainly in my thighs – like somebody pushing a rolling pin onto your thigh bones with all their weight,” says Victoria, who played Angie Appleton on the cobbles for 18 months until January 2019.
“The pain was excruciating and sometimes I’d have to stop as I couldn’t push through it. I felt frustrated by the restrictions my body created. I was achieving such great times but I always felt held back.”
It was almost a decade before Victoria found her health woes were not down to sporting wear and tear.
In 2004, at 22, she was so racked with physical pain and fatigue she cut short a contract as an entertainer in Alcudia, Majorca, and returned home to Manchester to get medical attention.
She was diagnosed with sickle cell disease, an inherited disorder caused by a gene that impairs blood cell development. It affects around 15,000 people here, mainly those from African, Caribbean, Hispanic or Asian backgrounds.
Normal red blood cells are round and move smoothly through blood vessels delivering oxygen to the body but people with sickle cell have hard and sticky C-shaped cells called “sickles”.
They get jammed in capillaries and clog blood flow, starving tissues of oxygen and triggering painful “crises”. Over time, repeated oxygen deprivation can cause infection, organ failure and strokes. The condition also weakens the immune system.
Victoria says: “I was disappointed in myself that I hadn’t listened to my body more and been aware of this life-threatening condition. That’s 100% what I do now.” Victoria has made lifestyle changes to improve her health and minimise pain crises. To combat dehydration, which makes sickle cells more sticky, she increased her daily water intake from the recommended two litres to a minimum of four and swapped highintensity gym workouts for yoga.
Stress also causes blood vessels to narrow, so calmer exercise is beneficial to sufferers. Victoria upped the amount of fruit and vegetables in her diet to provide more essential nutrients needed for blood cell formation.
Looking back, she realises the signs of her condition were hiding in plain sight. As a child, she recalls multiple flairs of pain every month, catching every bug going and being hypersensitive to temperature change.
“I couldn’t get involved in playing out in the snow as the pain in my hands was excruciating,” she says. “Even now, if I take something out the freezer, I’ve got to be quick.”
If both parents have a sickle cell gene, there’s a 25% chance their children will be born with the disease. Victoria’s mum Candy, 58, has a gene but not the condition. Her estranged dad did and died from the disease at 41.
Victoria was a baby when her parents split and only 11 when he died so she had no idea she might be affected. Her mum and even her GP believed her problems were growing pains.
Victoria believes the lack of awareness had its benefits. “If you’re told you have something and you can’t do things you can become conditioned by your condition. I wasn’t aware so I unconsciously trained myself to push through the pain. I think I made my body a bit stronger,” she says. “The fact I’ve done half of what I’ve done baffles many other people with the condition, because it’s not the norm.
Victoria says she’s on the lower end of the sickle cell spectrum, with far milder symptoms than her father. But it still put her in hospital for three weeks with a glandular fever-type virus in 2014.
“My body couldn’t fight it. I had a temperature of 41 and doctors couldn’t understand why it wasn’t coming down. They tried three types of antibiotics to shift the virus, my chest was struggling because of my asthma and I was wheezing a lot. It was very frightening.”
The experience was a turning point for Victoria who, after being discharged on Christmas Eve, made a pledge to overhaul her health.
“My body doesn’t operate at 100%. Sickle cell weakens my immune system so my body is fighting with less of an army. I’m keeping it the healthiest it can be. If any illness creeps in, I now hope my body can fight it,” she says.
With the exception of eating honey, Victoria is now strictly vegan and rarely drinks alcohol – no mean feat living in France where natives are passionate about meat, fish, cheese and wine.
“Initially, it was a struggle,” admits Victoria, who splits her time between her mum’s Manchester home and Nice where she’s spent three years with electrician boyfriend Jonathan Lomas, 31.
“But I do feel like I’ve mastered sickle cell. I’ve worked out how to live with it so it affects me as little as possible.”
Like many others with chronic illness, people with sickle cell disease are more susceptible to coronavirus, so Victoria has self-isolated since March.
But her focus is firmly on the future, and her dream of becoming a mum.
“We talk about marriage and kids all the time,” says Victoria, who has competed on The X Factor: Celebrity and appeared in two CBBC series, Almost Never and The Worst Witch.
“Jonathan isn’t likely to be a carrier people from Europe generally aren’t. But although our child will be less likely to inherit sickle cell anaemia, he or she may potentially be a carrier. Of course, we’ll have whatever checks necessary.”
■ Victoria is a patron of Sickle Cell Care Manchester (sicklecellcaremanchester.co.uk)