Lupus awareness month: How does this often undiagnosed condition affect sufferers?
PUBLISHED: 09:05 12 October 2015 | UPDATED: 09:10 12 October 2015
October is a month of awareness where a common but not well-known disease is sidelined in comparison to high profile events and diseases such as black history and breast cancer.
Lupus: Famous sufferers
Last week, pop star and actress Selena Gomez admitted she had been undergoing chemotherapy to treat the condition.
And she is not the only famous face to have been struck down by the disease.
Kelle Bryan from the 90s pop band Eternal was diagnosed in 1999.
Speaking to the Mirror about a relapse earlier this month, she said the disease caused a brain inflammation.
“My head jerked, I had a facial twitch, my speech was slurred and my vision blurred,” she told the paper.
“I wasn’t sure what I was capable of and took the huge step of ringing 999 to ask for an ambulance, although gripped with the fear that this might end with my children being taken away.”
Kelle had to be given a 12-week course of chemotherapy to treat the flare up.
The disease also runs through the family of American singer, Lady Gaga whose two aunts died from the illness. Gaga has tested borderline positive for it.
Lupus, a poorly understood and complex condition, affects many parts of the body, causing mild to life-threatening symptoms.
Ruth Liss, 60 from Chigwell Park, Chigwell, lived a normal healthy lifestyle before being diagnosed 18 months after the birth of her daughter, 20 years ago.
She said: “I went to the gym, loved dancing, until one day I couldn’t walk.
“Now, after lower back operations I have metal rods along my spine.
“I do not regret my daughter for one second but childbirth creates stress on the body and it’s one of the triggers of lupus.”
The chronic auto-immune disease makes the body’s defence mechanism attack itself.
Patients are 90 per cent female, with women of childbearing age most affected.
The national charity for the disease, Lupus UK, based in Romford, supports people who develop symptoms, through to diagnosis and those already living with the condition.
“Lupus will often go undiagnosed for a long time, on average seven years in the UK,” said Paul Howard, projects officer at the charity.
“Its symptoms often mimic those of other common conditions or are simply not being considered by a GP or consultant.”
Mrs Liss who now has to use a walking aid at home and rely on her husband or disability bus to get town, remains incredibly upbeat.
“Although lupus is a very nasty disease affecting people differently, there is always someone worse off than you.”
To add to her steely determination to live life to the fullest, Mrs Liss started a group so that people can support each other.
“It’s not all about lupus, we do have lives. We like to talk about what’s going on, have speakers, go to the theatre.
“But if we are having a rough time, then we have a contact to talk about how we are feeling.”
With around 50,000 diagnosed cases in the country and many more undiagnosed, Mrs Liss encourages people affected to join Lupus UK find out as much as they can and get support.
Alternatively, she extends an open invitation to Romford Lupus Group Coffee and Chat which meets the second Sunday of every month at 1pm Cafe Sorriso, Mercury Shopping Centre, Romford.
Contact firstname.lastname@example.org or telephone 01708731251 for further details.
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