British tennis star Elena Baltacha sadly died of liver cancer after years of living with a chronic condition which affects the immune system.
Aasma Day talks to a Preston woman battling the same condition who is involved with a support group for sufferers about why Elena was a true inspiration.
Hearing the devastating news about the death of tennis star Elena Baltacha of liver cancer sparked by a rare chronic condition brought all the memories of her own diagnosis flooding back for Martine Walmsley.
Martine, 43, who lives in Bamber Bridge, near Preston, and is married to Matt and has an eight-year-old daughter, Sophie, found Elena a true inspiration and her sudden death hit her hard.
Elena Baltacha, who died at the age of 30, would have known for more than a decade that she was at higher risk of liver cancer after contracting a chronic condition which affects the immune system.
The British tennis player was diagnosed at the age of 19 with primary sclerosing cholangitis (PSC), a rare chronic liver condition which affects the bile ducts and the liver.
The condition can cause fibrosis in the liver, causing a gradual deterioration followed by cirrhosis, a hardening of the liver that can lead to liver cancer.
Martine was diagnosed with PSC herself out of the blue seven years ago when she was living in Singapore with her husband and daughter, who was almost one at the time.
Martine recalls: “My diagnosis came as a complete surprise. I have Inflammatory Bowel Disease (IBD) and was undergoing a routine blood test when the results came back flagging the liver function tests as abnormal.
“I then had a number of different scans, including an MRI scan, which finally confirmed that I had PSC.
“I was lucky that my diagnosis only took weeks. I know some PSC patients who have waited for over a year before getting a diagnosis.
“Interestingly, more than 70 per cent of PSC patients have IBD and many are diagnosed ‘by accident’ like me.
“The diagnosis itself was devastating. I was told I was the only person in Singapore with PSC and that my prognosis was bleak.
“Of course, we Googled the disease and were shocked and frightened to read that the disease has no known cure or treatment.
“Worse still, some websites told me I may only have four years to live, with my liver gradually getting worse until it would no longer work.
“The only hope for someone with PSC is a liver transplant but, because there is a shortage of organs, you can become too ill to have a transplant and die while waiting.
“My daughter Sophie was just coming up to the age of one, and I believed I might not see her get to primary school, let alone high school.
“I felt isolated and frightened about my future. As a family, we decided to return to the UK to be nearer our families.”
On returning to the UK, Martine discovered the charity PSC Support, and says it was the best thing she ever did.
She explains: “I found out that PSC progresses very differently in different people.
“Some live perfectly normal lives with hardly any symptoms, while others progress quickly and need a transplant within a year.
“I met other people with PSC and was inspired. I realised that if other people could get on with their lives, so could I.
“It is a bit like living with a ticking time bomb inside me, because I don’t know what my future holds. But I do know that I want to make a difference and live my life to the full.”
Martine found the PSC Support charity very useful and became involved in writing newsletters for them.
Then, about three years ago, the chairman of the charity passed away and because Martine did not want sufferers to be without support, she became chairman.
Through her involvement with the charity, Martine learned that Elena Baltacha had PSC and found her a real inspiration.
Martine says: “Elena Baltacha is a wonderful example of someone who didn’t let PSC stop her doing anything.
“She worked hard and represented her country playing tennis, despite PSC.
“In my mind, I thought she was invincible, and I was shocked to hear about her death. It brought back all the feelings of when I was first diagnosed.
“Invisible symptoms of the condition include fatigue and abdominal pain, as well as the other symptoms you associate with liver disease like jaundice and severe itching.
“Every now and then, you can get a flare up of PSC called bacterial cholangitis which requires urgent antibiotics. I once had such severe itching that I wanted to scratch my skin off with a fork!”
Although PSC affects everyone differently, around one-in-10 PSC patients develop liver cancer like Elena Baltacha.
It is estimated there are around 4,000 PSC patients in the UK and Martine says it is important for those with the condition to make sure they are monitored carefully.
Martine, who is also chairman of the Liver Patients’ Transplant Consortium, says: “People with PSC are at increased risk of liver cancer and colon cancer.
“It is very important to have your condition closely monitored from someone who has experience of dealing with PSC. Because PSC is rare and poorly understood, it is not always easy to get a diagnosis or consistent care and monitoring.
“There are no PSC clinics or specialists in the North West. I have to travel to Manchester for care and, even then, I am seen in a hepatitis clinic and not a PSC one.
“PSC Support is a lifeline to many patients as it enables them to talk to other people who understand what you are going through.
“I am very determined to support researchers to better understand PSC and I want to promote organ donation as, at the moment, it is the only hope for someone with PSC.
“Every time I sew on another name label to Sophie’s school uniform, I am reminded that I am another year closer to seeing her get to high school.
“In the meantime, I will fight with everything I have to fight for people with this insidious disease.”
Details at www.pscsupport.org.uk. @PSCsupportUK or email@example.com