Elusive and incurable, lupus is now diagnosed in more Bermudians than ever as methods for spotting the illness improve.
For Ronisa DeFontes, president of the Bermuda Lupus Association, the life-changing discovery of her disease three years ago came as a call to arms.
“I didn’t want anyone else to go through what I did,” Ms DeFontes said, of returning to the island from hospital overseas to discover there was no support group.
The Bermuda Lupus Association has filled that gap.
The charity, which is holding a tag day tomorrow at the Gibbons Company Store as well as a Fun Run Walk later in the month, unites a community of residents living with the autoimmune disease.
Ms DeFontes had been “sick on and off”, but had no idea that lupus was behind her illness. Sufferers can go untested for years.
Lupus mimics other conditions, and Ms DeFontes said local doctors initially took the sickness clogging her lungs to be pneumonia.
Hosting bimonthly meetings for persons affected by lupus, the association also launched a support group last year, called Dragonflies, for children.
The group is open for children with other chronic illnesses.
Ms DeFontes said: “The group gives them others that they can relate to, and it also encourages them to be a kid, so that they don’t forget to play.”
Although lupus most often strikes women of childbearing age, anyone can be affected. Most develop lupus between the ages of 15 and 44.
Childbirth, a traumatic event, medical treatment or viral infections can trigger lupus, which turns a person’s immune system against the body, although some may have no visible symptoms.
Paula Williams got her diagnosis in 2013 after her blood pressure plummeted. In her case, doctors initially suspected leukaemia.
“They even called my family, not knowing if I would live or die,” Ms Williams recalled.
Even so, she said it was more than a year before her illness could be identified.
“That’s what’s so frustrating. You can have serious health issues for months, even years, and not know. It’s so hard to diagnose.”
Pain would strike from nowhere, and sometimes Ms Williams’s fingers would lock.
She said: “Normally, you have to have six to seven of the approximately 11 symptoms before they can confirm you are a lupus sufferer.”
“Devastated” by her diagnosis at the age of 55, Ms Williams started to educate herself.
“It can be confusing,” she said. “Some people don’t have symptoms, but inside the body there are drastic things going on. Eventually, it can affect vital organs like the heart, brain or lungs.
“You don’t know when you’re going to get the next flare-up. It’s a constant fight for your life.”
Ms Williams added: “What keeps me going is a positive attitude and trust in God. I don’t dwell on the negative. And I have wonderful support from my husband and daughter, my friends and co-workers.”
Tomorrow’s event at Gibbons Company runs from 9.30am to 6pm: persons donating $5 towards the Bermuda Lupus Association will receive a discount of 25 per cent off items purchased that day in the store.
The group’s Fun Run Walk starts at 5pm on Saturday, October 28, with a 5km race commencing at the Police Field in Prospect, Devonshire.
To learn more, call 333-3393, or e-mail firstname.lastname@example.org.