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Date: 6/6/2023
HOLYOKE — On May 24, Mayor Joshua Garcia proclaimed May as Lupus Awareness month for the city, a disease that has hit close to home for the mayor as his wife, Stefany Garcia, has been battling the illness since being diagnosed in 2014.
Stefany Garcia spoke at the mayor’s announcement and talked about the challenges she has faced with the disease. She was diagnosed shortly after the birth of their twins. Stefany Garcia added that before being diagnosed, she was unaware of lupus and emphasized the importance of self-care and adhering to medical advice.
“It’s an illness I had no idea about. I had no symptoms, they just kept sending me to the doctors for bloodwork because my bloodwork didn’t look fine. I just kept going to work until my body shut down,” Stefany Garcia said. “The next day I couldn’t get up because my kidneys were just shutting down at that point.”
Joshua Garcia also spoke about his perspective being with a partner who was living with the disease and noted that while Stefany has been healthy and recovered the last almost decade following her initial battles in the hospital with the illness, the disease has no cure even though there are treatments to assist. Stefany Garcia spent months recovering from the near-death experience and eventually underwent chemotherapy to assist in her recovery..
Symptoms of lupus include muscle and joint pain, fatigue or extreme exhaustion, skin rashes, fever, hair loss, kidney problems, mouth sores, sun or light sensitivity, heart problems and much more according to the Center for Disease Control and Prevention.
The autoimmune disease affects over 5 million people worldwide and is often more common in women than men, though anyone can be diagnosed at any age. Stefany said she feels good presently even though she still lives with lupus.
“You gotta listen to your body and know when your body is telling you, ‘you need to take a break,” Stefany Garcia said.
Joshua Garcia’s proclamation highlighted the unpredictability of lupus and stressed that the disease can cause severe damage to tissues and organs. He added that the disease was the “great imitator” as it is often mistake for other diseases leading to sometimes late diagnosis of the illness.
“My wife having lupus, our family, this is very important to us,” Garcia said. “For anybody who’s been recently diagnosed with lupus or might have a family member who has lupus, because it affects families, their support, friends from the Pioneer Valley Lupus support group, there are people out there that can help educate you more, help strategize and give you ideas, offer support.”
The proclamation also featured founder of the Pioneer Valley Lupus Support Group Lynn Gagnon. Gagnon was diagnosed with lupus over two decades ago and shared similar sentiments about the illness as Stefany Garcia. Gagnon also went through the process of misdiagnoses and treatments like Stefany Garcia as it took a while for doctors to discover and diagnose her with lupus.
Eventually after finding out she was living with lupus, Gagnon founded the Pioneer Valley Lupus Support Group to create community for others dealing with the disease. Her experience leading up to her diagnosis is a reminder of what can often happen to people and showcases the difficulties of identifying the disease.
“I had never heard of lupus before in my whole life…Finally when I was 48, I was getting very sick. I had skin problems, rashes and extreme fatigue. I always had blood tests my whole life and all I was ever told was, ‘you don’t have mono, you’re fine.’ Then I got gravely ill,” Gagnon said.
She went to the hospital and had no idea it could be lupus and noted it’s status as the “great imitator.” Gagnon also noted it takes an average of six years to receive a diagnosis for lupus after symptoms begin and there is no definitive test for the disease.
“This is why part of our mission is to spread awareness so you can get a quicker diagnosis and basically save your life because it attacks your organs,” Gagnon said. “Most lupus patients live a normal life span as long as they stay on their treatment plan with doctors, but it can be fatal.”
Looking for support for herself led to the creation of the Pioneer Valley Lupus support group as Gagnon consistently noted raising awareness helps those impacted by the disease as community support and education of the disease can help those get ahead of the illness before it could potentially be too late. For those looking for support or any information about lupus, the Pioneer Valley Support Group is available. Those interested can contact Gagnon via email at lupus.springfieldma.com or call or text at 413-265-8942.
Also speaking briefly at the proclamation was Lupus Support Group member Catherine Gloria Hughes who was diagnosed with lupus in her 30s, 40 years ago.
“When I was diagnosed with lupus, they gave me 10 years to live, and that was a death sentence. But I have two small children and I prayed,” Hughes said. “When I relocated from New York to Massachusetts I found Lynn [Gagnon] and I’ll tell you the support group has helped me tremendously.”
The proclamation will serve as notice that May is lupus awareness month in Holyoke and will raise awareness and education around the disease. All in hopes that the next person to be diagnosed can be better equipped to live through the illness.