Sarah’s story

Sarah was 52 when she was diagnosed with a rare type of von Willebrand disorder, also known as von Willebrand disease (VWD). 

She had suffered a lifetime of unexplained bleeding instances, experienced three very frightening haemorrhages and, for the previous decade, debilitatingly heavy periods.  

Sarah said: “All through my childhood I’d been told not to make a fuss, not to be the child that cried wolf, because if I did no one would believe me when I was ‘really’ injured. After a while I stopped making a fuss and ended up putting up with so much. 

“So, to find out that I have had a bleeding disorder my whole life and treatment was available was difficult. I struggled.” 

A lightbulb moment came recently when she twisted her ankle and received treatment at her haemophilia centre. She said: “For the first time I felt the pain of the injury and then the relief that you get when you have factor and your blood starts to work as it should. I had never felt that before.” 

My diagnosis was quite a pivotal moment, it finally explained why I had experienced such issues throughout my life, and knowing that the haemophilia team were there to support me, gave me the confidence to go ahead with the surgery I really needed.

Sarah

Sarah finds it hard to accept that so many chances to diagnose her condition were missed. Her bleeding disorder means that although her blood initially clots, it can’t sustain a clot, so her bleeds and haemorrhages happened a week or so after surgery. Not one doctor treating her haemorrhages suggested a bleeding disorder might be the cause. 

Traumatised by poor and insensitive treatment following her last haemorrhage, Sarah refused to attend hospital again. Her periods became unmanageable, she had to set an alarm hourly to change her pads at night and she dreaded dealing with embarrassing leaks at work.  

No one knew what she was going through, she said: “This was deeply personal and it involved blood – not an easy conversation. I kept it to myself.” 

Diagnosis happened when, faced with the prospect of major surgery that she had backed out of three years’ previously because she was terrified of bleeding, she mentioned her fears to the consultant.  Sarah said “I was fortunate on this occasion that the surgeon recognised my concern and arranged immediate preliminary blood tests which highlighted there was an issue.   There followed a lengthy period of blood tests and genetic testing to determine my diagnosis of type 2n VWD, before my surgery could go ahead.”   

Still new to her condition, Sarah has turned to Talking Red, the Haemophilia Society’s campaign to raise awareness, share knowledge and bring together women with a bleeding disorder.  

She said: “Mine was a lonely diagnosis – I didn’t know anyone with any type of bleeding disorder and I still don’t fully understand how to deal with my condition.  

“I want to be part of the Talking Red community so I can learn from others and if I can do anything that will help others in the same situation that would be tremendous.”  

Sign up for Talking Red Live which takes place on 5 March, 2022 in York for a chance to meet other women with bleeding disorders and hear from experts in treatment and care.