TTP is considered a true medical emergency. It is characterised into acquired (idiopathic) and congenital (familial) types and affects only 4-6 people per million, women more than men with a peak incidence in the forties. Funding enables UCLH to provide TTP patients aspects of care that are beyond NHS provision. This includes a whole host of activities and network events for those affected by TTP. It also supports long-term research into the disease by regularly financing lab equipment and clinical studies.
TTP affects not just the physical side of the patient’s health, but often has significant impact on a patient’s mental state and can have long-term effects of short term memory loss and depression. “That’s why patient awareness, education and network events are so important”, says Marie Scully, clinical lead for haemopathology who specialises in bleeding and clotting.
The fund supports the TTP network, which is a UK patient group who gather together to support one another by sharing their personal experiences and stories. There is a patient day every two years and the last event featured patient testimonials about their personal fight with the disorder.
Patients, or those affected by TTP can also take part in fundraising events organised by the team such as the London Bridgathon, which provides them with an opportunity to give something back, whilst enjoying the sites of London.
The fund supports research carried out by the UCLH TTP team who are the UK experts and are followed internationally. The research level is astounding. For instance, the team discovered that inherited TTP in women usually comes out at child baring age, and they developed a new protocol to have babies successfully.
Another example of excellence is the development of the monoclonal antibody, rituximab, an immunosuppression drug that is used for acute TTP admissions and improves outcomes by reducing stay and relapses.
Clinical studies are performed in the haematology and transfusion department at UCLH, which is the centre of excellence for TTP.
Currently, Marie is saving up for a state of the art piece of equipment that replicates blood flow and coagulation of those suffering with TTP which will be invaluable for clinical research activities.
If you or a loved one has suffered from TTP and are interested in attending a TTP network event, visit the website.