A Lancashire woman’s flu symptoms turned out to be symptoms of a little-known, aggressive form of cancer that affects one in a million people.
Emma Snape, 34, started suffering from the usual cold symptoms in February. The symptoms quickly worsened and she ended up in hospital.
Doctors initially diagnosed pneumonia, a serious and sometimes life-threatening lung infection.
Further tests revealed that the underlying disease was epithelioid hemangioendothelioma (EHE), an extremely rare form of cancer that only occurs in the cells lining blood vessels.
Emma and Kym Snape from Lancashire are hoping to raise money to fund research into the little-known killer who affects just one in a million people.
EHE is most common in young and middle-aged adults, and more common in women.
One of the symptoms of EHE is a dry cough that causes difficulty breathing.
Other symptoms include a lump or swelling in the soft tissue of the body under the skin and stomach pain, combined with weight loss if the disease is in the liver.
When Emma was diagnosed, doctors found twenty nodules in her lungs and more in her omentum, the fatty tissue that extends from the stomach to the intestines.
Doctors said her illness was terminal. Only half of those diagnosed will live longer than five years, research shows.
Since then, Emma has been in and out of the hospital for dozens of appointments and treatments.
Speaking about the ordeal, Emma’s twin sister Kym, mother of two, said: ‘It’s heartbreaking to see her go through this.
Research shows that half of people diagnosed with epithelioid hemangioendothelioma (EHE) will not live longer than five years after diagnosis.
“Technically it’s a terminal diagnosis because there’s no cure. It was the hardest year.
“Because she’s my twin sister, I find it really hard not to take control of the situation and make her better, because she’s literally my other half.”
Emma, also a mother of two, described her sister as “the real superwoman,” referring to her unconditional help in difficult times.
“I don’t know what I would have done without Kym,” she said. “From day one after I was diagnosed, she has been busy researching, fundraising, getting all sorts of different contacts together to help me, all while looking after her own young family.
“It’s been so overwhelming how generous and kind people have been. Everyone just wants to help, my work, small businesses, family and friends.
“People have really come together for me.”
Kym added that her sister sometimes suffers “hellish pain” because of her condition.
“She fights this disease every day and at the same time continues to be the best mother in the world to her two boys and her partner.”
Kym has a donation page to raise money for the EHE Rare Cancer Charity (EHERCC), which is working hard to develop a cure.
She has raised over £6,000 so far from generous local people and will be taking part in a sponsored run in November to raise even more money.
Kym said: ‘I have taken charge in the only way possible, which is by learning more about this disease and raising money for vital research, in the hope of finding a cure.’