Village party raises awareness about rare bleeding disorder

Written by Sam Wilson, November 10, 2023

A family put on a Halloween party for their community to help people understand what it’s like to live with a bleeding disorder.

Shanice, 30, and her daughter Reya, three, have a factor VII deficiency and often find that no one has heard of the condition, including doctors.

Shanice said: ‘I felt I needed to do something to raise awareness about our bleeding disorder as its important people understand what the symptoms are. You never know, someone might have an undiagnosed bleeding disorder which could be really serious if they don’t get the right treatment.

‘After the party, a lady in my village told me that what she’d learnt had made her wonder if her daughter had a bleeding disorder and she was going to get her tested. If I’ve potentially helped her, and hopefully others, then it was definitely worth it.’

The family, including Shanice’s son Jayden, 11, her partner Stevie and his son Rio, dressed up as the Addams Family and put on a fantastic Halloween party in the Suffolk village where they live. The event started lots of conversations about living with a bleeding disorder and also raised £422 for the Haemophilia Society.

As a result of the party, Shanice was interviewed on BBC Radio Suffolk about her bleeding disorder and her family’s story was featured in their local newspaper.

It took a long time for Shanice to get a diagnosis. She bruises very easily and bled for longer than normal after cutting herself, but her symptoms were dismissed by clinicians. When she gave birth to her son Jayden, Shanice felt the bleeding she experienced was not right, and pushed doctors to investigate further. She was finally diagnosed with a factor VII deficiency a few years later, aged 24. Her daughter Reya was diagnosed with the same condition a few months ago.

Shanice and her daughter must travel to the Royal London Hospital, a two-hour journey each way, to receive specialist care, but she now has the treatment and knowledge she needs to manage their conditions.

She said: ‘When the party was over, I felt really overwhelmed and emotional. I never expected so many people to be interested in our bleeding disorder and to turn up to support us.’

You can find out more about rare bleeding disorders here.