Sjögren’s real lives
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]