From seizures to fatigue, what it’s really like living with lupus
Around 90% of lupus sufferers are female. Here, Laurence White talks to local two women about coping with this debilitating and incurable condition.
Lupus is a poorly understood chronic illness which can lead to severe complications and is even potentially life threatening. Yet such is the low awareness of the disease that, according to a recent survey, it can take seven and a
half years to get a proper diagnosis from the onset of symptoms.
It is an incurable autoimmune disease in which the body’s defence mechanism begins to attack itself and can cause inflammation and damage to joints, muscles and other organs.
Women are most likely to get the disease accounting for 90% of cases, although, it can also affect men and young children. Lupus is neither contagious nor infectious, although this is a common misconception among people when they meet those with the condition.
Chris Maker, director of charity Lupus UK, says: “When people hear that lupus is an autoimmune disease they immediately equate it to other diseases of the immune system like Aids and HIV. That is totally wrong.”
We talk to two women about the disease.
'I now have dialysis three times a week and I had to splash out on some wigs after my hair fell out'
The first hint Lisburn teenager Rebekah Green had of anything wrong was one day in December 2014, when she came home from school complaining of a sore knee.
Rebekah, now 17, recalls: "I told my mum but we both thought it was just something associated with wear and tear on the joint.
"We went to my GP who took a number of blood tests and shortly afterwards I was referred to Musgrave Park Hospital in Belfast."
It was there after more blood tests and scans of her knees and other joints that doctors delivered the diagnosis of lupus.
"I had never heard of it", says Rebekah. "I didn't know what treatment I would get or what was involved."
Initially, Rebekah was put on a course of eight steroid tablets taken each morning, but her condition took a threatening turn in July last year when she suffered three seizures.
"I was at home and mum was making the dinner. She asked me to help her mash the potatoes and when she turned around I was taking the first seizure.
"She was so shaken that she couldn't even remember the telephone number for the ambulance for a few moments.
"I didn't know what was happening or what I was doing at the time. I took two seizures at home and another in the ambulance on the way to hospital."
Rebekah says the seizures were triggered by high blood pressure, a side effect of lupus, and she was kept in intensive care in hospital for over a week. "Obviously, my mum, Donna, dad Paul and little brother Daniel were under a lot of stress at this time, trying to keep home life as normal as possible and going to work and school," she says.
Rebekah was given dialysis in hospital after her kidneys failed but the treatment worked and she was allowed home.
Doctors also discovered two cysts on her liver.
Then last December came another frightening episode.
"I couldn't get a breath and I had to be taken to hospital and put into an induced coma," she says. "I had a breathing tube and another tube for feeding me during the three days I was in intensive care.
"I was then put on dialysis again and now have to have it three times a week - Monday, Wednesday and Friday - for three hours each time.
"I feel zonked out after undergoing the treatment but feel terrific in the intervening days and I'm full of energy.
"Unlike some other people with the disease, I don't suffer from fatigue but after the treatment last July, which involved getting drugs intravenously my hair fell out.
"Every morning when I woke up I would find clumps of it on my pillow.
"It is growing back but much more slowly than I would like. At the time, I had really long hair which went right down my back.
"I ordered some wigs on the internet and have been wearing them.
"My friends know I have wigs but they are fine about it."
Rebekah has now left school and was supposed to start a hairdressing course in Belfast last September, but postponed it on doctor's advice until September this year.
"I hope everything goes okay in the coming months and I can start the course.
"I am looking forward to it", she adds.
‘I have never been able to go back to the job I loved or have any more children’
It was two decades ago, when Newry woman Bronagh Galloghly was still a relatively new mum, that she began to experience the symptoms that would lead to a diagnosis of lupus.
“I couldn’t lift my arms to brush my hair,” she says. “My fingers and ankles were swollen and the fatigue was all-consuming. I thought these were just the after-effects of having my daughter Danielle who was still very young at the time. I just carried on until it got so bad that I went to my GP.
“I was lucky that she was really clued up and did the correct autoimmune screening blood test. Within two weeks I got the diagnosis that I had lupus. Indeed I was a textbook case.”
What followed meant a big upheaval for the family.
Bronagh spent three weeks in Musgrave Park Hospital where she was given large amounts of steroids — that was the standard treatment at the time, she says, but which are now known to have severe side effects. She was also given CT scans to determine if any internal organs had been damaged.
“It was an awful time,” says Bronagh. “The children were very young and my husband Damian, a bricklayer, had to take a year off work to look after them and become my carer.
“The children have had a very different life from what I would have hoped for them. For example, I was never able to go back to work. I had been a medical receptionist before having the children (she also has a son James). I would also have liked more children, but that was not an option either.
“My daughter once said to me that she did not want to know what other mothers do. She thought every mother went to bed to sleep for several hours during the day every day.
“Over the years the children have seen me in hospital on drips and oxygen and seen me taken away from home in an ambulance. In a way it has made them better people. It has made me and them more empathetic to others who are ill. Indeed my daughter decided to study occupational therapy because of my condition. She has seen how OTs and physios have looked after me over the years.”
Shortly before the interview Bronagh was hanging out the washing. To most that is just an everyday chore, but it takes a lot out of the 49-year-old woman.
“My 81-year-old mother was away out early this morning, but it takes me a good while to get going in the morning. It took a lot of effort for me to hang out the clothes this morning,” she says.
Over the past 20 years Bronagh has suffered a number of huge flare-ups in her condition requiring hospitalisation.
“I get terrible fatigue, even worse than normal, muscle weakness and every step is painful. My hands start to close in through the pain in the joints and I also suffer shocking headaches,” she says. “Other symptoms include skin rashes — the skin gets hot and tight — which can occur all over the body. I have also suffered hair loss but fortunately it is only slight.
“This is an awful sickness and you can be really very ill. I have developed asthma as a side effect of the lupus and even getting to hospital when I have a flare-up can be very taxing. It can take me six to seven months to get back on my feet after a bad flare-up.”
Bronagh is full of praise for the medical staff at Musgrave Park Hospital and for their determination to get their patients the most advanced medicines for treating the disease. She adds: “Some of the medicines are very expensive and they have to really fight to get them. I cannot praise the staff enough for all they have done for me over the years and I know they do the same for everyone with the condition.”
Bronagh is affected by virtually all the symptoms of the disease and that includes an intolerance to bright sunshine.
“Even going out to the clothes line I have to be covered in sunblock or I will get a rash. I used to go on sun holidays years ago but now it would just too much hassle,” she says.
“I have to plan every outing. I had a meeting in Belfast last night and had to go to bed for several hours to make sure I was well rested before the journey.”
She describes lupus as “an invisible illness”, adding: “If you saw me with my make-up on and getting ready for a night out — I usually have to come home early — you wouldn’t think there was anything wrong with me or that I have to take 14 tablets a day.
“Another problem is that lupus can lead to other conditions. I also have Raynaud’s — a condition that limits the blood supply to hands and feet when I get cold — and Sjogren’s syndrome which leads to tear and saliva glands drying up. That’s the sort of complications you can get with lupus. But there is life with lupus even if the quality of it can be affected.”
Symptoms of the disease with no cure
The main symptoms of lupus are fatigue, joint pain and rashes but may also include fever, swollen lymph glands, hair loss, high blood pressure, headaches, stomach and chest pain and depression.
While there is no cure for the disease treatments which can alleviate the symptoms include non-steroidal anti-inflammatory drugs, hydroxychloroquine, a drug used to treat malaria, corticosteroids, and immunosuppressants.
Other advanced drugs are available for those patients who do not respond to the usual treatments.
Source: NHS Choices website