Expected to die at 16, Maria is still battling blood disease at 52
HUBBY GRAND MARATHON BID TO RAISE AWARENESS OF CONDITION
FOR almost her entire life Maria Fletcher has lived with a rare, hereditary blood disease that meant she wasn’t expected to live past the age of 16.
At just one year-old she was diagnosed with Beta Thalassaemia, which affects the production of haemoglobin in her blood, leaving her with a multitude of health issues and needing lifelong treatment.
Although Maria’s parents did not suffer from the condition, they both carried the faulty gene which she inherited, causing her to develop it. Screening for the gene had not been introduced before she was born.
Since she was a baby, Maria, who lives in Blaby with her husband Robert, has had to undergo blood transfusions every three weeks which, without, her condition would be lifethreatening.
She has suffered from fatigue, fragile bones, heart problems, reduced fertility, diabetes and too much iron in her blood due to the transfusions.
At the age of 16, Maria suffered from heart failure and was given two weeks to live.
Last year, she developed chronic pancreatitis which she said was a result of diabetes.
Now, at the age of 52, Maria continues the battle - staying positive, despite the daily challenges she faces.
“I’ve faced lots throughout my life and with this condition, you don’t know how long you’ve got but I don’t let it stop me from living as normally as I can,” she said.
The condition mainly affects people of Mediterranean, South Asian, Southeast Asian and Middle Eastern origin.
Maria, who is Greek Cypriot, said during her younger years her condition was not met with sympathy by some members of her community.
“I was considered disabled and there was a lot of stigma around that,” she said.
“It has been quite traumatic for my parents as well as myself and it wasn’t easy when I was diagnosed because it wasn’t a condition that was known about as much.”
The blood disorder also meant Maria could not menstruate, and in turn, was unable to have children.
“Because of the treatment and the condition, I didn’t grow how normal children grow,” she said.
In her thirties, Maria’s condition worsened when she became one of the victims of the contaminated blood scandal of the 1980s.
She had to start receiving further treatment for Hepatitis C in addition to more blood transfusions and experienced a number of side-effects that left her too unwell to work. “It has been extremely challenging to live with this and without the transfusions, I wouldn’t be able to do basic things like walk up the stairs,” she said.
“I still keep myself busy at home and I walk the dogs but I do get tired quickly.
“I’m very lucky that my husband was always very understanding about my condition.”
Her husband Robert, 48, now wants to help raise awareness of her condition and fund research into treatment by running the London Marathon on October 3 this year.
Throughout the lockdown, Robert, a former Leicestershire Police officer, spent the last 12 months shielding with Maria in their Blaby home.
“It’s been torture, basically,” Maria said. “It’s been very difficult not being able to do anything apart from going to my hospital treatments.” “It has been hard for both of us, mentally and physically.” Maria described Robert as her “rock” who has seen what she goes through day after day and continues to support her.
The money Robert raises will go towards the charity, UK Thalassaemia Society (UKTS) which supports people affected by the blood disorder and is run by volunteers.
Maria said: “Robert hasn’t done anything like this before but he is really excited about it determined to give it 110 per cent.”
He is hoping to raise £1,000 for the charity, alongside “educating the wider public” about the condition. Maria said this was particularly important in Leicester, due to the ethnic minority communities that are mainly affected by thalassaemia. To help Maria and Robert reach their target, you can donate at:
Robert hasn’t done anything like this before but he is determined to give it 110 per cent
Maria Fletcher