Periods suck. Every woman thinks of those five-six days every month with the most distaste they can muster up. Imagine if you had to go through this, not every month, but every day for five long years.
Never mind the amount of money you'd have to spend on sanitary napkins or tampons, or painkillers, ice cream, sweets, or whatever you were craving, but imagine the constant pain and soreness you'd have to deal with. Twenty seven-year-old Chloe Christos had to deal with just that. At 14, she got her first period, and then didn't stop bleeding for the next five years. “I knew it wasn't quite right, but I was also embarrassed to talk about it. I felt very different and pretty alone,” she told ABC News.
Soon, she developed severe anaemia, and somehow managed to make it through high school. At 19, she started taking weekly iron infusions, but even after seven months her iron level was too low. She got tests done, which reported that she had Von Willebrand disease, a lifelong bleeding disorder which prevents blood from clotting properly. While haemophilia is perhaps the most recognised bleeding disorder, Von Willebrand disease is the most common.
Christos would lose about half a litre of blood every four days, as opposed to an average woman who loses about 20 and 60 millilitres of blood during her period, and this constant blood loss made her weak and listless. “I came across a lot of people, even in the medical profession, who didn't realise what it meant for women to suffer from a bleeding disorder,” she said. Working as an art director and stylist, Christos has to travel a lot. “I think I have ended up in the emergency room at almost every country I've travelled to,” she says.
She was put on a synthetic drug to counteract the disorder, which would stop the bleeding for 12 hours, but it would start up again as soon as the drug started to wear off. After seven years, when Christos got off the drug, she realised that her problem had just become way worse than it was. Doctors even suggested a hysterectomy, which she declined. “I don't know if I ever want kids but I never wanted to get rid of what made me a woman. And I was terrified of being in my mid-twenties and going through menopause...I definitely became frustrated ... I would end up in the emergency room, sometimes three times a week,” she said.
Then, Christos reached out to a haemophilia centre in Adelaide, and travelled there a week later to start a new treatment plan. She began taking a blood product usually offered to men with haemophilia, and finally found something that worked. If she takes the drug at the beginning of her cycle, she can experience what the rest of us call a normal period, one that lasts between four-five days.
Christos is now campaigning for women with bleeding disorders all over the world to get equal rights of care, and is raising money via this GoFundMe page so she can travel to the World Congress in Orlando, and make it happen.
“I was surrounded by friends who have supported me so much through this journey at the treatment centre in Perth. I had not felt that good in years,” says Christos about the new treatment. We truly hope she succeeds in her endeavour, not just to spread more awareness about Von Willebrand disease and other similar bleeding disorders, but to also get other women the standard of care they deserve.