Soggy, wool mittens and paper-thin boots were all Dinah Chong Watkins had between her and the long, frozen winters growing up in Canada. Back then, in the 60s, no one knew about Raynaud’s syndrome, so her complaints about icy blue fingertips were always met with the not too useful refrain, “Cold hands, warm heart.”
A couple of decades later, improved cold weather fiber technology successfully countered sub-zero temperatures. As did her serendipitous move to Hong Kong, with its tropical year-round climate.
However, a few months after her son was born, Dinah noticed an ulcer on her fingertip that wouldn’t heal. Another one appeared, and even after weeks of Neosporin® and bandages, they stayed open and painful to the touch.
A career move for her husband took her family to Minnesota, where she says she found it warmer climbing into her freezer than going outside in the dead of winter. (Clearly no condition could take her sense of humor.) There, she rotated through family medicine physicians who prescribed more Neosporin and more bandages, but her digital ulcers still wouldn’t heal. Finally, on her third visit, a dermatologist recommended she be tested for scleroderma.
In March of 1996, she went to the Mayo Clinic, and after a battery of tests, she was diagnosed with the disease. At that time, information on scleroderma was scarce, so most physicians weren’t familiar with it. She was prescribed Losartan, but with daily temperatures below -10°F, medications hardly beat back the symptoms.
“I remember my first scleroderma support meeting vividly,” Dinah said. “It was just after dinner and I stepped out into the frost and frigid darkness of a Minnesota evening. We were a small group of eight to 10 adults, mainly women, with a couple of husbands for moral support. As the evening wore on, I was taken aback seeing two of the women with missing fingers, amputated due to the disease.”
When the meeting broke up, she left quickly. She didn’t stay to talk to anyone, but grabbed a handful of brochures and a newsletter on the way out. Once she got home, she began reading them.
“The first pages were informative, but the following pages contained memorial after memorial of scleroderma patients,” she said. “Full-page obituaries of very nice people, their achievements and heartfelt memories, written by the friends and families they left behind.”
Dinah claims what scared and stuck with her the most was the brief time between their diagnosis and their death. She couldn’t help but wonder if she’d be around to see her son finish grade school. So, that was her first and last scleroderma support group meeting for the next 20 years.
Soon after, her family moved again, this time to China, where she tolerated the slow onset of symptoms: reflux, stiff and curling fingers, digital ulcers, and fatigue.
“On the plus side, my face started to beat gravity, as the scleroderma began to tighten up my skin,” she joked. “Friends started asking which facial moisturizer I used… and closer friends surreptitiously stared at my jawline, looking for telltale facelift scars.”
After a few years, her condition seemed to go into remission. By chance, she learned of the Scleroderma Foundation and their upcoming conference in Anaheim, California. She flew back to attend, and it opened a world of knowledge, resources and good friendships.
“The conference was the first time I had even met someone else with scleroderma, she said. “And instead of being afraid, I saw people with scleroderma in all different situations and stages. It gave me a sense of renewed hope and comfort.”
Since then, Dinah has been more involved with support groups, and she wishes she didn’t run away from that first meeting in Minnesota.
“My condition may not have changed, but I would’ve had another scleroderma shoulder to lean on.” Which is exactly why she encourages all patients to step up and share their pain, frustrations, achievements and advice. “We’re listening, regardless of how many fingers we have.”