LUPUS RELATED NEWS & UPDATES
Latest news from the Lupus Trust
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.
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.
The reason I decided to have a go at writing this was because over the years I have heard so many patients talking about the difficulty in claiming benefits and the fact that the people dealing with their claims don’t understand anything about lupus. In a way I sympathise with the person that has to deal with the claim as lupus is far more complex an illness to have to assess than some others, it’s definitely not cut and dried so they can just tick off boxes. However, not understanding lupus does not justify them refusing benefits.
I always tell the story of how, before diagnosis of lupus, I had a severe pain in my jaw and my dentist said that I needed root canal. A couple of weeks after the procedure I still had the exact same pain. I was referred to a dentist in Harley Street who also couldn’t work out what was wrong, so I’d spent a lot of money on unnecessary dental work (not to mention the pain). This made me a bit wary of dentists.
I’ve often posted on social media telling people that if they see us out and about, even if we outwardly look very well, we’re not ‘cured’. So I thought I’d address the issue of the fact we can sometimes have good days, these are defined differently for everyone as we all have varying degrees of pain that we consider ‘normal’ for us.
Getting lupus in my late 30’s came as a complete shock. I was normally very healthy, nothing more serious than a cold, then I was suddenly told I had a chronic illness and I would never get better. Whilst the fact I had finally got a diagnosis (after 4 years) was a relief, it was still a complete bolt out of the blue to find out I had lupus something I’d previously never even heard of.
At the time there was no internet so all I could do was rely on my rheumatologist to give me information and look at library books, which were often out of date. With the best will in the world rheumatologists can give you the medical facts, but unless they have lupus themselves they won’t be able to tell you how you might feel about it.
I sort of knew that this could be a serious issue, but it was also something that could possibly be managed and I could live with it, but there were some things that I didn’t expect.
It was only after her partner´s death that He Meili realized the full meaning of marriage.
As a lesbian couple in China, He and Li Qin kept their ties largely unspoken, sometimes introducing themselves as cousins. This rarely bothered He until Li succumbed to complications from lupus in 2016, and Li´s parents demanded that He hand over the deed for their apartment and other property documents under Li´s name.
When you’re having a flare you really don’t want to move much so this might help. You can prepare a flare or bad day box/bag in advance to have ready for when you need things close at hand. The idea is to put everything you might need into the box, include all your favourite things and a few treats.
I’m sure you’ve read the fact that the majority of lupus patients are between 15 and 45. This is correct, but lupus can develop at any age and can affect men and children too. Doctors may dismiss lupus if the patient falls outside the 15 to 45 age range and this may lead to even further misdiagnosis.
We're thrilled to announce that actor, Kazy Tauginas, currently starring in Equalizer 2, is heading up the Lupus Awareness month campaign for the Lupus Trust this year. He has given us permission to use the photo’s here and has made a teeny video for us, so please feel free to share on all your social media.
Lupus Trust supporter, Kelle Bryan, talks about how she’s had to relearn how to walk and talk after suffering a stroke two years ago
Kelle has just revealed that she is to join Hollyoaks as the character Martine. She said "Two years ago I auditioned for Hollyoaks and was offered the role but I was too poorly to take it".
