A Lancashire woman’s “flu-like” symptoms turned out to be telltale signs of an aggressive and little-known cancer that affects one in a million people.
Emma Snape, 34, began experiencing typical cold symptoms in February, which quickly worsened and landed her in hospital.
Doctors initially diagnosed pneumonia, a serious and sometimes life-threatening lung infection.
Further tests showed that the underlying disease was epithelioid hemangioendothelioma (EHE), an extremely rare form of cancer that forms in the cells lining blood vessels.
Emma and Kym Snape from Lancashire are raising money to fund research into the little-known killer that affects just one in a million people.
EHE is most commonly associated with young and middle-aged adults and is more common in women.
One of the signs 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 along with weight loss if the disease is present in the liver.
When Emma was diagnosed, doctors found 20 nodules in her lungs and more in her omentum (the fatty tissue that runs from the stomach to the intestines).
Doctors said her illness was terminal. According to studies, only half of people diagnosed with this condition live more than five years.
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, a mother of two, said: ‘It’s been heartbreaking to watch her go through this.
Studies show that half of people diagnosed with epithelioid hemangioendothelioma (EHE) will not survive more than five years after their diagnosis.
“Technically it is a terminal diagnosis, as there is no cure. It has been the most difficult year.
‘As she is my twin, it has been very difficult for me not to be able to control this situation and make it better, as she is literally my other half.’
Emma, also a mother of two, described her sister as “the real superwoman”, referring to her unwavering help in her times of need.
“I don’t know what I would have done without Kym,” she said. “From day one after I received my diagnosis, she threw herself into research, fundraising and gathering all sorts of different contacts to help me, while having to look after her own young family.
“It’s been incredibly wonderful to see the generosity and kindness of people. Everyone wants to help: my job, small businesses, my family and friends.
“People have really rallied around me.”
Kym added that some days her sister is in “agonising pain” because of her condition.
“She fights this disease every day while continuing to be the best mother in the world to her two children and her partner.”
Kym has created a Donation page to raise money for the EHE Rare Cancer Charity (EHERCC), which is working hard to find a cure.
So far he has raised over £6000 from generous locals and will be taking part in a sponsored run in November to help raise more money.
Kym said: “I’ve taken control in the only way I can, which is by learning about this disease and raising money for critical research to be done in the hope of finding a cure.”