It doesn’t have to be all dark clouds
Newly diagnosed? Help starts here
One of our most asked questions.
WHAT CAN I DO IF I THINK I MAY HAVE LUPUS BUT CAN’T GET A DIAGNOSIS
A little effort goes a long way
There's more you can do to help yourself
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
When a new patient asks for advice one of the first things I say is treat your body well, it needs your help. High up in the list of things I personally think is very important for your body (lupus or not) is good nutrition.
As we say in our section on diet there’s no particular diet that is recommended for lupus but there are foods that can help your lupus or on the opposite side of the coin make you sick.
You can join in with an organised fundraising events and raise funds for us.
Please ensure you let the team know you are fundraising for the Lupus Trust.
When I met a lupus patient I’d ask what other autoimmune conditions they had. They’d always ask how I knew they had more than lone condition and I used to say it was like lupus having a party and invited all its friends to come along. In other words its sadly not unusual for us to have two or more autoimmune conditions, know as overlap syndrome.
We are continually being told to beware of scams, every day yet more seem to pop up and the scammers one and only aim is to part desperate people from their money. One of the most prolific scams seem to be concerning ‘cures’ for various medical conditions, including lupus.
Many, many years ago I was diagnosed by Professor D’Cruz with carpal tunnel syndrome, something that’s quite common amongst lupus patients. It causes tingling, numbness and pain in the hands, fingers and wrists because of pressure being put on the nervous system. Lupus can cause joint pain (arthralgia) and inflammation in and around the joints, resulting in problems like arthritis, tendonitis and as mentioned carpal tunnel syndrome.
I’ve had lupus for about 30 years and this is personally what I wish people knew.
It’s incurable and chronic. Just because you see us out and about doesn’t mean we’re ‘better’ or ‘cured’. We have some days that the pain level is tolerable and some days where it isn’t so we take have to take full advantage of the days we can function at all.
The ‘Who Cares Wins Awards’ takes place each year to celebrate healthcare heroes from the frontline NHS staff to the ordinary people who go above and beyond.
Jayden, aged 12, was revealed as the 2022 winner of the Young Hero award, after saving the life of her mum, Natasha, who suffers from Lupus and heart failure.
Most of us couldn’t envisage running 6 miles let alone over 600 miles but that's what Philip Young is doing for us. He's pledged to run 52 half marathons and has completed 36 already, 7 of those were in 7 days!!!!
I was misdiagnosed for over 4 years before I was told I had lupus. My reaction? “Thank God, what’s lupus?” That may seem weird but I was continually being told by GP’s there was nothing wrong with me and that it was all in my head.