Platelet Function Disorders are relatively rare with only about 6,000 people in the UK currently diagnosed as sufferers. The Platelet Charity is the only charity raising awareness of PFD as they can impact sufferers on a daily basis. Our aim is to offer support, medical research and improved diagnosis for all platelet-like bleeding disorders (such as ITP and von Willebrand’s disease). In doing so we can help clinicians in the challenge of differentiating between the acquired and inherited bleeding disorders and giving patients a specific diagnosis and treatment.
Patients with PFDs will be registered with the doctors and nurses at a haemophilia centre and will see them intermittently or if they need treatment. The haemophilia centre can often be a long way from their home, and attending can make patients miss time from work or school. Some patients carry a treatment pack with them at all times so they can give treatment quickly if they do develop a bleed.
Most patients with PFD in the UK carry a ‘green card’ to alert medical staff to the fact that they have a bleeding disorder. Simple things like going on holiday can be problematic, as patients with PFDs will need to find out where they should go if they develop a problem whilst they are away, and they may need to carry treatment with them. Some patients with PFDs are advised not to participate in sports with a lot of physical contact or risk of head injury, such as rugby or boxing. The label of having a PFD and the symptoms associated with it can cause embarrassment and stigma to some patients who just want to be ‘normal’.
We want to help people to lead as normal a life as possible, and hope that raising awareness will help to do this.
One way of doing this is to work with haemophilia centres across the country and organisations such as the Haemophilia Society. We will be running a number of events at various centres – from updates to the staff on the latest PFD research, to patient awareness days as well as local fundraising.