Chloe Christos got her period. Then she didn't stop bleeding for five years.

By Briana Shepherd.

Chloe Christos was 14-years-old when she got her first period.

She did not stop bleeding for 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,” Ms Christos said.

Ms Christos developed severe anaemia and barely made it through high school. At 19, she was given weekly iron infusions, but after seven months her iron level still sat terrifyingly low.

“I was tested and it came back that I had von Willebrand disease,” she said.

Von Willebrand disease (VWD) is a lifelong bleeding disorder that prevents blood from clotting properly.

While haemophilia is perhaps the most recognised of bleeding disorders, and it can be the most severe, it is not the most common – VWD is.

For Ms Christos, the diagnosis was not a cure, and she went through many more years of pain, severe bleeding and frustration.

“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.

Ms Christos also presents low levels of factor VIII, a common feature in VWD patients, and the factor associated with classic haemophilia.

A stylist and art director who has worked around the globe, she was put on a synthetic drug for seven years, which helped release factor levels in her body but also resulted in what she called “terrible” side effects.

“I love and am very passionate about my work so I just kept going,” she said.

“But I think I have ended up in the emergency room at almost every country I’ve travelled to.”

Finding the right treatment

Ms Christos settled in Perth around three years ago and started receiving treatment at the WA Centre for Haemophilia and Bleeding Disorders.

She declined suggestions that she undergo a hysterectomy.

“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,” she said.

Ms Christos was also eventually taken off the synthetic drug.

“It was terrible. I was suddenly right back to where I felt I couldn’t work, I couldn’t leave the house,” she said.

“I definitely became frustrated … I would end up in the emergency room, sometimes three times a week.”

Looking for answers, Ms Christos reached out to the next closest haemophilia centre, and a week later she travelled to Adelaide to seek a new treatment plan.

Ms Christos said that meeting changed her life. She soon started taking a blood product which is used for haemophiliacs across the country, mostly men.

“I remember the first day I used the blood product,” she said.

“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.”

Ms Christos is now 27 years-old, and for the first time in 13 years she has a normal four to five-day period.

“That happened for the first time less than a month ago. I truly feel so lucky that I have found something that works for me,” she said.

A consultant haematologist at the WA Centre for Haemophilia and Bleeding Disorders, Dominic Pepperell, said he hoped that women did not feel it was more difficult for them to receive treatment.

“I think that women with bleeding disorders are at a disadvantage because they’re more likely to be affected day-to-day just by the mere fact that they have menstrual bleeding,” he said.

“It can really affect people’s lives from that point of view.

“I hope that people don’t find that [treatment is] more difficult to access, or less useful.”

Call for more awareness of bleeding disorders

Sunday is World Haemophilia Day, and this year the call is “treatment for all”.

While Ms Christos’ journey has not been easy, she knows it could have been much worse.

World Federation of Hemophilia chief executive Alain Baumann said 75 per cent of people with bleeding disorders still received very inadequate treatment, or no treatment at all.

“The percentage is even higher for those with VWD and rare factor deficiencies,” he said.

“In many developing countries, the lack of access to care and treatment often leads to misdiagnosis.”

Mr Baumann said there were still misconceptions about bleeding disorders.

“Generally speaking, for many years people believed that only men could have symptoms of haemophilia and women who have – or ‘carry’ – the haemophilia gene do not experience symptoms themselves,” he said.

“We are now more knowledgeable that female carriers of the haemophilia gene do experience symptoms.

“Unfortunately many women will live with these symptoms for years without being identified and diagnosed, and this occurs in both developed and developing countries.”

‘We can still do more’

Ms Christos is now a strong advocate for females with bleeding disorders around the world.

In July she hopes to raise enough money to travel to the World Hemophilia Congress in Orlando, where she plans to volunteer at the very first women’s booth.

“It’s a sign that things are changing. But we can still do more,” she said.

She is working with other women on a proposal for a government-funded data collecting project.

“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,” she said.

It has been a long road but Ms Christos said she hoped by sharing her journey, it could help other women receive the correct diagnosis and treatment they deserved.

“It has always felt like this taboo subject,” she said.

“I am speaking out about this because I want women around the world to receive adequate care and treatment for bleeding disorders.”

This post originally appeared on ABC News.