Marjorie’s heavy periods had a huge impact on her education and career, but it took her decades to get a bleeding disorder diagnosis.
Although Marjorie’s biological father told her about the family’s history of a bleeding disorder, her adoptive parents didn’t understand the condition and it was never talked about.
Despite having regular nosebleeds as a child and then extremely heavy periods, Marjorie was not formally diagnosed with severe factor XI deficiency and moderate type 2B von Willebrand disorder (VWD) for more than 30 years.
Marjorie said: ‘My periods were very heavy and prolonged. At school I found it very hard to concentrate. My periods made my head very foggy, I was anaemic and I was tired all the time. I knew it wasn’t normal but there was no one I could talk to about it, I became quite withdrawn.’
By her 30s Marjorie’s condition had worsened, her periods became much heavier and lasted for 21 days each month. The anaemia and fatigue this caused were so difficult to manage that she had to give up work. It was at that point she saw a haematologist and was finally diagnosed.
‘My diagnosis has been life-changing, I feel liberated, I feel I can cope with my illness. Everything is managed and more in control.’Marjorie
With diagnosis came more effective treatment. Marjorie uses tranexamic acid and desmopressin nasal spray to manage her condition. Although her periods still last for 15 days, they are lighter and easier to live with and she has returned to full-time work as a finance writer.
Although now in her 40s, Marjorie has only recently started to meet other women with bleeding disorders, thanks to Talking Red, our campaign to raise awareness about women’s bleeding disorders and bring those affected together. She said: ‘Meeting other women with bleeding disorders meant I could share my experience and feel supported. It has made a huge difference.’
Marjorie is keen to support other women who are struggling with possible symptoms, such has heavy periods and nosebleeds. She advised: ‘Seek help as soon as possible. Once you’ve got a diagnosis you know how to treat yourself better so ultimately you feel more secure.’