Why do we need to raise money?
We are raising funds for medical research and to build awareness of the impact that Platelet Function Disorder (PFD) and platelet-like beeding disorders has on daily life. This impact varies a lot according to the type of PFD. Some patients only get very minor bruising which can be painful and unsightly, but is not life threatening. Some patients can have really severe bleeding such as nosebleeds that won’t stop and lead to anaemia (a low red blood cell count), bleeding from the bowel or very heavy periods in young girls and women. The most serious type of bleeding is bleeding inside the head or brain, sometimes referred to as intracranial haemorrhage. Having surgery (or having children in women) is a time of particular worry and many patients need treatment prior to these events.
Why do we need to raise awareness about PFD?
Diagnosing an inherited PFD or platelet-like bleeding disorder is complicated, so at present some patients who bleed more than normal don’t know what type of bleeding disorder they have. Research into improving the diagnosis will, hopefully, help all patients with bleeding disorders and also their families by giving them a more specific diagnosis. . Acquired PFDs such as ITP and von Willebrand’s disease can often be diagnosed on the basis of a patient’s clinical features and current and previous blood results. Whereas, testing for inherited PFDs is normally only done by specialist centres given the rarity of these blood disorders.
There is an urgent need for new tests to enable doctors to identify that a patient has either a PFD or an acquired platelet-like disorder so that they can provide the appropriate medical support. At present, we only have a small number of tests for some but not all platelet disorders. The Platelet Charity will make a very important contribution through our medical research, improved diagnosis and support for treatment centres.