Even though it’s estimated that 5 million people worldwide have Lupus, lupus patients can often feel alone and isolated. Aside from having your symptoms misunderstood by family, friends and even the doctors you turn to for help, the very invisible nature of lupus can make it hard to find others to connect with. So, here is the first of hopefully many interviews and profiles of people with lupus, who are doing awesome things in their lives and for their communities.
Name: Geoff Thomas
Age: well, not as old as some perceive : )
Born: Sydney, Australia
Now Living: Surfers Paradise, Australia
1) What kind of lupus do you have?
Cutaneous or Discoid Lupus
2) When were you first diagnosed?
I was diagnosed in 2004 although it took a while to discover what I had. I was working in a fairly stressful job with long hours and suddenly I had these ugly lumps appearing on my face. I did the rounds of various doctors looking for an answer. I tried everything they suggested and applied tube upon tube of cream without result. Eventually I visited my mother’s dermatologist and he cut a chunk out of my face and sent it away for testing. About a week later I was sitting on the other side of his desk and he passed me a piece of paper with the words, Cutaneous lupus erythematosus scribbled down. I remember he showed me a book with various rash photos and told me to keep out of the sun. Strangely, the sun didn’t, and still doesn’t affect my lupus… stress seems to be my trigger, if you like.
3) What have been the main day-to-day symptoms you’ve experienced?
I can go months or even a year without any problems. Yet when the lupus does re-surface, I’m back on the pills until it clears up ~ usually a few weeks later. I can help feeling how lucky I am sometimes, compared to everyone else suffering a lot more than myself and with really serious health issues.
4) Compared to the information available for women with lupus, there isn’t that much around about how men experience lupus – when you were first diagnosed, did you have trouble finding information and resources?
I think there was a lot of confusion. I’d never heard of lupus, and the disease has never had a ‘profile’ here in Australia. I did go to the internet for help, and it took a while to discover what this whole disease was all about and how serious it was, and still is. I’m sure way back then that I realized the need for awareness on a greater scale.
5) According to your website bios you’re a photographer, a cyclist, a writer and now a publisher – has having lupus had an effect on these activities?
Well I’d always had an interest in photography and tennis and I ended up photographing various international tournaments. I played a lot of tennis too, but took up cycling as it was easier on the body ~ or so I thought. And in 2003 I cycled across Australia and photographed the experience. Four years later I had a cause close to me and decided that maybe cycling around America could be a good way of raising valuable awareness. I’d always had an interest in the media and returned to school to study radio broadcasting and gained some valuable experience when it came to websites and the like. The Lupus Magazine evolved and was established to offer those creative types with lupus an avenue to publish their articles, art and experiences. Eventually it became a massive task to coordinate everything in the little spare time I had, but I’m so glad I persisted with it and I’ve met some wonderful people as a result. So actually, lupus has driven me to parlay all my interests, and as a result, gain additional awareness along the way.
6) Aside from The Lupus Magazine, you’ve also published The Lupus Notebook – what inspired you to put it together? Do you have any other lupus-related publications in the works?
The Lupus Notebook was something I had in the back of my mind for a number of years. I had all these photo’s just lying around and I wanted to put them to good use. Up until scaling back The Lupus Magazine, I just didn’t have the time to pursue all these little projects I’d put on hold for so long. I knew there was a need for people to document their conversations with medical professionals and doctors, so they could refer to their notes at any time. The difficult thing was publishing something on a large scale that wasn’t going to be too costly to produce or buy. And at the same time to donate all the profits directly to lupus research. I might expand it in the future and re-issue it another form, but apart from that suppose I’m just taking a little time-out at the moment and getting a life!
7) What advice do you have for other lupies struggling to cope?
Probably to realize that you’re not alone is the biggest thing. Lupus can be so confusing, lonely and misunderstood. But there is support out there and despite lupus, you’ll discover some wonderful people along the way.
You can find out more about Geoff and his doings at the following spots online: