Lupus Awareness Month
October was Lupus awareness month where efforts were made across the world to raise awareness of the incurable rash known as Lupus. Lupus is an immune system illness; it became called Lupus, which means wolf, as people used to think it was the symptom of a wolf bite.
Alder Hey is a pioneering hospital and our research into the Lupus condition is no exception, so much so that we are now the first Centre of Excellence for Childhood Lupus in the UK. This high accolade reflects the dedication of our staff here in the pursuit of treating this severe and potentially dangerous condition. Alder Hey is currently running a new trial examining the effects of Belimumb , which targets the disease in its early stages. Alder Hey has the first global patient signed up.
Olivia Lloyd, Lupus Research Nurse, explains the condition: “Where children are concerned Lupus affects dominantly adolescents, the disease mimics effects of a typical adolescence accurately for example with fatigue. This makes Lupus incredibly difficult to diagnose.”
There is a huge spectrum of how Lupus can affect a patient, but the condition can be critical where a child is concerned. Olivia Lloyd: “Lupus is more aggressive in children than adults, we are not completely sure why but think it’s to do with the burden of the disease, for a child to be diagnosed means they will have the disease for a lot longer.”
Professor Michael Beresford, based at Alder Hey, is a leading researcher into Lupus and explains further the complications of the condition: “There are many challenges when treating Lupus; the disease can sometimes cause growth problems, blindness and other complications. Children are extraordinary in understanding their disease and the treatment that goes with it. The effect of Lupus on the whole family can be extreme. The impact on the diseases doesn’t just affect the child but also their siblings and extended family.”
One of the more problematic aspects of the disease is its difficulty to diagnose. Olivia Lloyd: “Adolescence is a very difficult time to be diagnosed with a condition like this. The side effects of the drugs used to treat Lupus can be incredibly impacting on an adolescent, as they will often experience acne, facial swelling and weight gain as a result of the treatment.”
Though the impact of being diagnosed with Lupus can be huge it is possible for patients to lead a normal life with the right treatment and support from friends and family. The treatment of Lupus and care of its sufferers is consistently improving, from stem cell research into the conditions genetic background to equipping families to help patients manage the condition. Increasing awareness of Lupus and knowledge of the condition can only benefit the progression of treating this life changing illness.