Sjögren’s real lives
I was working full-time as a GP, studying, and a busy mum with two children.
I noticed over about 6-12 months that I was becoming overwhelmed by joint pain and fatigue. I had dry eyes — particularly when I was driving.
My family were bewildered initially. Pain, fatigue and dryness are very hard to quantify and express. I can’t walk more than 100 meters without experiencing joint pain. And dry eyes mean I only drive locally, making me dependent on other people. The disease had a huge impact on us.
I was on an emotional rollercoaster of sadness at the loss of health, and frustrated at not being able to do what I wanted to. Depression set in due to the overwhelming symptoms.
After the shock of the diagnosis and coming to terms with chronic disease, I joined support groups. For the first time I felt what it’s like to have an “invisible” disability.
I started using lubricating eye drops and a humidifier. Part of the fatigue was getting enough rest for my eyes, which would smart and sting if I read or used a computer.
Regular dental checks help to prevent tooth decay, as does sipping soda water and a soft healthy diet. I began a Pilates course, took regular afternoon rests, and cognitive behavioural therapy to cope with negative thoughts. I also tried various immunosuppressants and anti-inflammatory drugs.
Coming out of winter I’m a lot happier because the cold exacerbates my aches and pains and I hate the dryness (and heaters) of winter.
I don’t know of any other family members with Sjögren’s syndrome, but my daughter has coeliac disease, my sister has ‘Burning mouth syndrome’ and I have a second cousin with lupus. My mother had severe asthma.
I’m very impressed and excited about Garvan’s Hope Research study into rogue clones cells. It could help a whole range of people suﬀering severe and sometimes life-threatening autoimmune diseases. Raising awareness plus developing markers for disease could lead to earlier diagnosis and treatment. Diagnosis can still take several years.
[* Name changed]
After reaching my 40s, I noticed my eyes were becoming increasingly dry, something I put down to long hours at the computer. Then around 50 I developed a very dry mouth as well. At the time I was working hard to establish a new company based on technology transfer.
In August 2005 I started developing symptoms of what was later diagnosed as lupus, including the classic eye-mask rash, and shoulder pain.
It took nearly 18 months to get a diagnosis of lupus with central nervous system involvement, and of Sjögren’s syndrome. My family doesn't have a strong history of autoimmune disease, although my sister had severe excema and asthma. I now know autoimmune diseases are often concomitant.
Besides the various immunosuppressants I'm taking for lupus, I am also dependent on two types of eye drops, and special toothpaste and a mouth spray to maintain oral health.
I currently move in and out of flare-ups and recovery. It’s exhausting and overwhelming a lot of the time. In summer I have particular difficulties because I don’t sweat much and so easily get overheated — which exacerbates everything.
The problem with autoimmune disease is that the constant attacks on the organs will cause irreparable damage over time, so the earlier one's diagnosed and deal with the peaks of inflammation the better.
However I am hopeful that Garvan's immunogenomics research is leading to a better understanding of the mechanisms of immunity, and better remedies.
[* Name changed]