Within the Royal Free renal department there are four consultants who lead a team specialising in lupus and vasculitis. IMage above, from left to right: Dr Ruth Pepper, Marilina Antonelou, Scott Henderson, Sally Hamour and Prof Alan Salama
Lupus and vasculitis are auto-immune diseases. These are conditions where the immune system, which is intended to protect us from external threats such as various germs and viruses, instead misfires and fights against our own organs leading to their malfunction. The damage can be to any organ, but kidney damage is quite common. That is why these diseases have become of interest to renal specialists. There are only a few hospitals in the UK which specialise in these diseases, and their expertise is generally located within a renal department or a rheumatology (rheumatism, arthritis, and other disorders of the joints, muscles, and ligaments) department.
Lupus and vasculitis are difficult to diagnose as they display a wide range of symptoms, all of which may also apply to other more common diseases. Most GPs will never see more than one or two cases in their whole career, making it difficult to make a diagnosis, which often leads to delays in getting patients seen by the right team.
Scleroderma is another auto-immune disease, and if it affects the kidneys it is treated by our consultant team.
Above: from left to right: splinter haemorrhages, seen in many forms of vasculitis in the nailbeds- a sign of blood vessel damage; A typical vasculitic rash seen in legs and feet; A chest x ray showing an area of bleeding in the lungs( normal is black, on left side bleeding is white, shown by arrow), a more serious sign of blood vessel damage.
As well as diagnosing and giving initial treatment for these diseases, our Royal Free consultants run a weekly out-patient clinic on Monday afternoons for on-going treatment, monitoring and coordinating research and trials in these specialist areas. Most patients will need to attend this clinic, but once stabilised and if their treatment is successful this may be no more than once every three to six months.
Information and support for these diseases is available at specialist websites run by the following charities –
Scleroderma & Raynaud’s UK
Other websites, including Facebook and discussion groups, are available. Remember that these diseases may behave slightly differently in different individuals, so it is best to discuss your own particular issues with your consultant team. In addition, we advise care if using only American websites as the differences in health systems sometimes result in different protocols being used, and some aspects may not be applicable to UK patients.
Lupus, vasculitis and scleroderma are officially defined as rare diseases. General information about these is available at Rare Disease UK. This explains that a rare disease is defined as one that affects less than 5 in 10,000 of the general population. However Rare Disease UK also points out that there are about 8,000 rare diseases and more are being identified all the time, so 1 in 17 people, or almost 6% of the population, are affected at some point in their lives. This equals about 3.5 million people in the UK having a rare disease.