ITP Awareness Week: Making things better for ITP patients through research
Immune thrombocytopenic purpura, known as ITP, is a blood disorder characterised by a lack of platelets in the blood.
ITP is an autoimmune disease in which the immune system mistakes the platelets as being foreign and destroys them. It can follow a virus, vaccination or certain medications, but for most people the cause is unknown. It is often only diagnosed after a blood test reveals a low platelet count.
Symptoms can include big bruises, mouth blisters, blood clots in the eye, little red dots all over the body, and in rare cases, a bleed in the gut or on the brain. About 1 in 30,000 adults in the UK live with the condition.
It is ITP Awareness Week this week and to mark it, Louise Taylor, one of the few ITP nurse consultants in the UK, who is based at Barts Health NHS Trust, tells us about her work.
The Royal London Hospital is a specialist centre for ITP. We see about 450 patients. Every patient’s journey is different - some have acute ITP, which goes away on its own, others have persistent ITP, which is for up to a period of 12 months, while others have chronic ITP, which lasts beyond a year. The disease does not discriminate between genders or races - anyone can get it and it is no more prevalent in one group of people than another.
We try to give as many of them as possible the opportunity to get involved in clinical trials, and we recruit to them regularly - in fact, I have been a Principal Investigator on clinical trials before.
My role as a nurse consultant means I am more or less on equal footing with a doctor - I can see and advise patients, prescribe and start and stop treatments. I also act as a patient’s port-of-call if they need to speak to someone.
I work as part of a multidisciplinary team, because some patients develop ITP as a consequence of living with something else, such as HIV.
Standard treatments for ITP are used to increase the platelet count and so combat the symptoms. These can be steroids or immunoglobulin initially.
It used to be that in some cases of ITP which were not responding to treatment - known as refractory ITP - we would have to remove the patient’s spleen, but we have not done that procedure at the Royal London in someone living with ITP since 2010.
This is largely because of new drugs which stimulate the bone marrow to produce platelets.
Treatments are very much tailored to the patient and now we focus on improving their quality of life.
Research has definitely made a difference to the lives of these patients. It feels great to be a small part of that.
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.