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
A Chinese husband was forced to pass up treatment for cancer so that his wife and daughter could both receive the medical care they needed.
Ke Meinan, 42, was diagnosed with stomach cancer in 2015 and his 46-year-old wife Wang Huaying diagnosed with breast cancer a month later.
But when their 16-year-old daughter was diagnosed with the autoimmune disease lupus, the family, from the eastern province of Jiangxi, realised that they could not afford to pay for all three of them to be treated.
After Alison Carter's daughter Amy was diagnosed with lupus and epilepsy as a teen, pain became part of her daily life.
Amy, from Halifax, Yorkshire, would take up to 30 pills-a-day but in December it all became too much - and she died of an accidental overdose aged 23.
We’re just not used to hot weather in the UK so when we get a sudden heatwave our body struggles to cope with it, especially sleeping. In countries that have more heat than we do they have air conditioning but it would be used so rarely here that the vast majority of us don’t have it. So what can we do to help us sleep in the hot weather?
I often ask people what is the worst thing about having lupus and get varied responses, one response that other people might not expect is ‘I feel guilty’. Even thought we didn’t cause it and can’t control it, we can still sometimes feel guilty about having a chronic illness.
To support patients, care givers and healthcare professionals on World Lupus Day, an expert-led report, ‘A Vision for Lupus’ has today been published to help highlight gaps and inconsistencies in care and areas for action to address the gaps that can often exist for patients and their families living with lupus, a chronic, inflammatory, autoimmune disease that affects approximately five million people globally.
When it comes to virtual reality (VR), most people may think of computer games, but the application of VR is far more than that.
VR is widely applied today in medical services, particularly in pain management. Wearing a headgear equipped with VR technology, patients enter a virtual realm and are immersed in what they see. The experience effectively disperses their brain’s perception of pain, thereby easing the pain.
In 2018 Scarlett Schneider was diagnosed with a rare case of pediatric lupus, which nearly took her life. She recovered after a lengthy stay at Sanford Children’s Hospital in Fargo, the region’s only Children’s Miracle Network Hospital.She amazed doctors with her resilience and sunny disposition in the face of a life-threatening illness. Now she is bringing hope and encouragement to children and families across the country.
GSK announced that the US Food and Drug Administration (FDA) has approved, under priority review, the use of the intravenous (IV) formulation of Benlysta (belimumab), a B-lymphocyte stimulator (BLyS)-specific inhibitor, in children with lupus from as young as five years of age.
Toni Braxton will soon receive an honor that, to her, is just as prestigious as her seven Grammy Awards.
The R&B/pop star will be presented with Lupus LA’s Loop Award for her work on behalf of the organization’s ongoing fight against the autoimmune disease. The presentation will take place during Lupus LA’s 15th annual Orange Ball at the Beverly Wilshire Hotel in Beverly Hills, Calif. on May 4.
Fundraising challenges you can take part in for 2018/2019, including the iconic London Marathon!