Living with lupus can be unpredictable and lonely, but one Dubbo resident is urging those with the disease to reach out this week.
Wednesday is World Lupus Day. Lupus is an autoimmune disease categorised by a wide range of symptoms, from joint pains to organ damage.
Deb Kinsela, who has systemic lupus erythematosus, said she hoped Wednesday would be a time of education and support.
“My hope this World Lupus Day is that those with lupus do not feel alone and if they do, reach out to others for support. For those who know someone with lupus, I hope they have a conversation about how lupus affects them and what they can do to help. For everyone else, I hope they take the time to check out a website and have some awareness of lupus.”
During her early 20s Ms Kinsela said she was experiencing fatigue and joint pain. It got so bad she couldn’t spend more than two hours out of bed.
She was initially told she was depressed and prescribed antidepressants. It wasn’t until a fill-in GP heard the list of symptoms and referred Ms Kinsela to an immunologist that she was diagnosed with lupus.
In her day-to-day life, Ms Kinsela said she needed some extra self-care, such as ensuring she got enough sleep, exercised regularly, managed her stress and took her prescribed medication.
“Even with the best self-care living with lupus can be unpredictable. You can be feeling relatively okay one day and wake up the next day with one or more symptoms like fatigue, nausea, headache, ‘brain fog’ including difficulty getting your words out and remembering things, fevers, joint pain, muscle aches, rashes mouth ulcers, etc.” Ms Kinsela said.
“You don’t know if this will be a minor flare and lasting for a short time or a major flare which could last longer and cause lasting damage to your body such as kidney damage. This can cause anxiety, and stress is a known trigger for flares.”
While she was already aware ultraviolet light, such as fluorescents and halogens caused flares, Ms Kinsela said she most recently discovered air fresheners and essential oils also caused problems.
However despite also having Raynaud’s syndrome and Sjogren’s syndrome, Ms Kinsela said she considered herself lucky for having avoided major organ damage so far.
Lupus affects one in 1000 people. Of those, 90 per cent are women.
In Dubbo there is a support group for people with autoimmune conditions, established through the Autoimmune Resource and Research Centre (ARRC).
It was a great way to share frustrations and gather helpful ideas for managing symptoms, Ms Kinsela said.