Lupus - the mystery illness that changes people’s lives
AS PART of Lupus Awareness Month, which has been running throughout October, one sufferer has spoken out about how her day-to-day life is affected by the illness.
An estimated 50,000 people in the UK have the condition and it remains a mystery to many. Natalie Maunder was diagnosed when she was 25 and 12 years on it has changed her life irreparably.
She said: “As soon as I say to people I suffer with lupus, the immediate response is ‘what is that?’
“I suffer day-to-day and, being a younger person, people don’t expect me to be unwell.”
This month, the charity Lupus UK is keen to open people’s eyes to the illness of the immune system, which makes the body more susceptible to picking up other conditions.
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About 90 per cent of sufferers are women and they have to try to avoid contact with direct sunlight because it can exacerbate the symptoms.
In the majority of cases it causes long-term issues including extreme fatigue, joint and muscle pain, hair loss, rashes, headaches and depression. Memory loss can also affect some patients.
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Because none of those symptoms are specific to lupus, a diagnosis is difficult.
Natalie was passed between several doctors before she was given a final diagnosis because there is no definitive cause, symptom or cure.
She said: “I have been unwell since I had my daughter 14 years ago and it is quite common to get it after childbirth.
“It feels so painful but you can’t tell people that because they don’t understand.”
Natalie, who lives in Wrington, said it is very difficult to live a normal life because she does not know how she will feel from one day to the next. As a result she had to give up work.
She said: “It affects everything in my day-to-day life. I have to take over 25 tablets every day to try to control it.
“If I don’t take them it could be life-threatening.
“I can’t do a college course because I know I tend to be able to do one week but cannot guarantee I can sustain it.”
In addition to taking the tablets she requires oral steroids and steroid injections to allow her to live as normal a life as she possibly can.
Lupus UK tries to educate people of the illness and fund research into finding a cure.
Natalie’s partner Gareth Thomas and her niece’s husband, Stacey Gooden, raised more than �1,000 for the charity by riding from London to Brighton last month.
She said: “They have seen what it has done to me and so they wanted to do something to raise funds for research.”
The charity has several regional sectors designed to help people who are in need of advice.
Anne Jones, who lives in Easton-in-Gordano, has been a contact for many years and said the nature of the illness means it is important that people speak out.
She said: “When people are diagnosed it is a very lonely illness as people don’t know much about it.
“It’s frightening, especially when it is a young person with a young family and the fatigue is the worst thing.
“The fatigue you get with lupus and other auto-immune diseases means you sometimes can’t move. It is a job to lift your head off the pillow.
“I’m not here to give medical advice, I’m just here to give them peace of mind.”
She added it was better to talk to Lupus UK members because some reports on the internet are dated and ‘horrendous’.
She was diagnosed 18 years ago and has seen some websites wrongly claim sufferers will die within five years.
Anne said she is always there for people and urged anyone concerned to call her on 01275 374803 for any advice.