When Chloe Christos got her first period at 14 years old, she the didn’t stop bleeding for five years.
For those who don’t know, a ‘typical’ period lasts about a week and should happen every month.
The Perth resident, now 27, told ABC News that her lifelong struggle with uncontrollable periods often landed her in the emergency room for iron transfusions to control the sever anemia she’d developed.
“I knew it wasn’t quite right, but I was also embarrassed to talk about it. I felt very different and pretty alone.”
When Christos turned 19, a doctor tested her blood and found she had von Willebrand disease, a lifelong bleeding disorder that prevents blood from clotting properly.
However a cure was still awhile away, with one doctor offering to perform a hysterectomy, which Christos refused.
“I don’t know if I ever want kids but I never want to get ride of what makes me a woman. And I was terrified of being in my mid-20s and going through menopause”.
For a long time, doctors struggled with figuring out how to treat a woman with a bleeding disease.
“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”.
After several years of testing various treatment options, Christos found one that works for her.
Now, at 27 years of age, she’s just had her first normal, four or five day period for the first time in her life.
Christos is now working to raise awareness that women can and do suffer from bleeding disorders despite the fact that physicians have always thought only men could suffer from them.
She has set up a GoFundMe page so she can go to the World Federation of Hemophilia, World Congress in Orlando in July 2016.
There, her goal would be to advocate for women with bleeding disorders globally for equal rights to quality of car and access to treatment.
“A lot of statistics and data is kept on diagnosis and treatment for men. There’s almost nothing on women that doctors can refer to, and I hope we can change that.”