A woman was diagnosed with a rare blood disorder that caused her to have her period for five years straight.
Chloe Christos, 27, first got her period when she was 14-years-old, the Daily Mail reported. But when she started bleeding, it just wouldn’t stop.
“Day to day my life was literally being cared for by my mother,” Christos told the Daily Mail Australia. “I couldn’t do anything … I was fainting a lot, I had dangerously low blood pressure, and it wasn’t really a good idea for me to drive or go out.
“I really love being physically active, and that is what was most frustrating for me.
“Every single day I was in the sick bay at my school.”
Most women lose anywhere between 20 and 60 milliliters of blood during their period. If a woman loses more than 80 milliliters of blood, it is considered a heavy bleed and usually a sign of menorrhagia.
In the span of four days, Christos would lose more than 500 milliliters of blood. She told ABC News she developed extreme anemia and had weekly iron transfusions.
“I knew it wasn’t quite right, but I was also embarrassed to talk about it,” She said. “I felt very different and pretty alone.”
Christos was diagnosed with an inherited bleeding disorder called Von Willebrand disease. The disease causes problems with the protein in the blood that helps control bleeding. It takes longer for blood to clot and for the bleeding to stop.
Christos was treated with a synthetic drug that targets the low factor levels in her blood. She used the drug for seven years and experienced “terrible” side effects. The drug stopped the bleeding for 12 hours, but the bleeding would start again once it wore off.
Christos declined to undergo a hysterectomy. She stopped taking the synthetic drug, but that made her condition worsen.
“It held me back in so many ways,” she told the Daily Mail Australia.
Christos consulted with a hemophilia center in Adelaide, and was given a product commonly given to men who suffer from hemophilia. The treatment worked and she had her first regular period that lasted about four to five days.
“It’s the difference between being hospitalised for two weeks of the month and taking two paracetamol and having a heat pack for one day,” she said.
Christos now hopes to raise awareness about the disorder and fight for women around the world to have access to different treatments.
In speaking with ABC News, World Federation of Hemophilia chief executive Alain Baumann said that people thought only men could suffer from hemophilia, and that women could carry the gene, but not present symptoms.
Christos started a GoFundMe page. In the page’s description, she said she plans to attend the World Federation of Hemophilia World Congress in Orlando in July.
“When needing assistant to help control severe bleeding episodes that there is a great lack of education and awareness about bleeding disorders and that they can happen amongst women,” she wrote. “I found it particularly hard at times for even doctors to treat me equally when presenting at emergency rooms and being refused treatment altogether because I’m either a female or not taken seriously, and still do to this day.
“This has been mostly due to a lack of knowledge and awareness and this happens all over the world.”
Christos added that she would like for the Australian government to fund a data project for women who suffer from bleeding disorders. She said doctors are reluctant to prescribe women with the same drugs men use to treat bleeding disorders.
“Getting the right diagnosis first of all is an issue in itself,” she added. “Helping people find an adequate treatment plan, that’s another thing.”