LUPUS RELATED NEWS & UPDATES
Latest news from the Lupus Trust
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.
Kathy Chow a prominent Hong Kong actress, singer and producer has died suddenly aged 57. Kathy is know to have had Systemic Lupus Erythematosus for several years.
Kathy was a leading Hong Kong acting star of the 1990s. She was best known for her role as Zhou Zhiruo in the 1994 TVB series The Heaven Sword And Dragon Saber. Her last film role was on 2021 action comedy, “Heroes Return,” directed by Yip Wing-kin. Kathy was lead actor and producer.
According to Chinese news site St Headline, Kathy was diagnosed with systemic lupus erythematosus. Her condition was not publicly revealed, so only a few people knew the reason why the actress could not move easily.
Her mother said she wishes her daughter will “stay happy in another world, your family is proud of you.”
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.
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.
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.
American musician, singer, songwriter and actress Julee Cruise has died at the age of 65.
She appeared as a character in Twin Peaks, singing in the town’s bar, and in its movie spin-off Twin Peaks: Fire Walk With Me. She also featured in Twin Peaks: The Return, Lynch’s third season of the show, in 2017. Twin Peaks creator David Lynch has paid tribute to Julee, who recorded the TV show's haunting theme, as "a great musician, a great singer and a great human being".
On 28 March 2018 Julee announced on her Facebook page that she had systemic lupus, which caused her considerable pain and affected her ability to walk and stand.
Her husband, Edward Grinnan, wrote on Facebook: “She left this realm on her own terms. No regrets. She is at peace … I played her [B-52’s song] Roam during her transition. Now she will roam forever. Rest in peace, my love.”
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.
