Welcome to Lupus Trust
Official Support and Information
A resource for patients, carers, medical professionals and fundraisers.
In 1991 the Lupus Trust (previously St Thomas Lupus Trust) was set up to fund vital research into lupus and provide information on lupus. Since then, we have worked tirelessly with nursing staff, clinical research teams, patients and those who care for friends or family with Lupus. You can learn more about our background here.
Our aim is simple - we ultimately want to find a cure and in the meantime advance the treatment of lupus. We do our best to ensure factual information is shared around the world and that there is an understanding over the difficulties and often life changing circumstances that affect people with lupus.
Our online resource and community should provide many useful and interesting answers, however if you require more information or think we could benefit from additional content on this website, please contact us.
The Latest Lupus Trust News
One of the things people say most often when they see you is ‘how are you’, an innocent enough question to most people, but when you have a chronic illness are they asking exactly how you are or just being polite? How many people want the full low down of how we’re actually feeling?
My stock answer, even with people I know well, is ‘Oh I’m fine thanks’ and I’d be pretty sure a lot of other people with chronic illnesses are saying the same thing. So why do we give this answer?
The news comes from a rheumatologist from the University of Alberta who believes that symptoms such as chronic fatigue, cognitive impairments and muscle pain can be linked to patients who have been implanted with mesh devices.
Jan Willem Cohen Tervaert, director of the Division of Rheumatology explains.
“In my practice, I studied 40 patients who had mesh implants and found that almost all of them had symptoms such as chronic fatigue, cognitive impairment known as “brain fog,” muscle and joint pain “fibromyalgia,” feverish temperature, and dry eyes and dry mouth,” Tervaert said.
Model Robyn Lawley has shared shocking photographs of the injuries she suffered following a horrific fall down a set of stairs, earlier this year.
The 29-year-old, who was diagnosed with Lupus in 2015, had a seizure nearly two months ago, falling seven feet down the staircase at her New York home, landing on her face.
Childhood-onset systemic lupus erythematosus (SLE) differs from adult-onset disease in important ways, but treatment approaches generally have derived from the adult arena, a pediatric rheumatology expert said.
Young adults with systemic lupus erythematosus have a work loss incidence rate of 20% to 40%, right at a time when they are experiencing multiple transitions in their personal and professional lives, according to Carole Dodge, OTRL, CHT, of Michigan Medicine.
When you get diagnosed with an incurable illness some people feel the need to give you unsolicited advice and with the advent of ‘Dr Google’ they also seem to have suddenly become experts on your condition.
With a lot of lupus patients this sunny weather will be causing dreadful problems as light sensitivity is a common symptom of lupus. Some patients have actually traced the start of their lupus back to a holiday in a hot country, so sunlight can actually sometimes actually trigger lupus.
My story is on this website and if you’ve read it you will know that it took me over 4 years to get a diagnosis of lupus. In the end it was sheer luck that my GP got fed up of seeing me and referred me to a rheumatologist, who happened to be Professor David D’Cruz (a rheumatologist with a special interest in lupus, now at the Louise Coote Lupus Unit, London).
In 2003 I had a massive flare which resulted in a three and a half month stay in hospital. I was quite poorly and watched helplessly while my condition deteriorated, on some days it literally felt like I was in some disaster movie. Surely this couldn’t be happening to me?
On the 70th anniversary of the NHS coming into action, legendary singer Seal has opened up on his battle with Lupus.