Lupus is a mysterious and often misunderstood disease affecting millions worldwide. Behind every diagnosis lies a story of resilience, and hope – but also struggle.
For one family, the journey began fifteen years ago when Mario, a beloved brother and friend, was diagnosed with lupus. The road to diagnosis was arduous, marked by doctor visits, tests, and several extended hospital stays. Fatigue, uncontrollable fevers, and overall feeling of illness were just a few of the early symptoms that left him feeling unwell. As his condition worsened, he began retaining water, resulting in a 75-pound weight gain from fluid retention.
After a lengthy hospital stay, which included a stay in the intensive care unit, the family was left fearing the worst. Following a month of extensive testing and consultation, Mario’s lupus diagnosis was received. It was a journey through uncertainty, but the diagnosis of lupus brought clarity, along with a newfound determination to fight. Mario knew his future moving forward with lupus would be a battle, but it was one he wasn’t willing to go through without a fight.
Embracing the Lupus Diagnosis
Receiving the diagnosis was a turning point, leading the family down a path of lupus awareness and advocacy. Their initial reaction to Mario’s diagnosis was one of uncertainty and fear due to their lack of familiarity with the disease. But with Mario leading the way, they embarked on a journey to learn everything they could about lupus. Through Mario, they discovered the Lupus Foundation of America and quickly began attending Walk to End Lupus Now® events, becoming regular attendees over the course of the following decade.
The first lupus walk became a pivotal moment in their journey. Wearing shirts adorned with a powerful message that quickly gained popularity in the lupus community, the family stood out as advocates for a cause that was now personal. Mario’s charismatic and uplifting personality inspired those around him, family and friends, to put on purple, attend walks, and become lupus advocates.
“We were happy to be there and support Mario. We had a great turnout with family and friends. It was truly amazing,” said Lydia Hierl, Mario’s sister, reminiscing on their first walk. “The butterflies and the sea of purple. It made us feel like we were all part of a family. There was strength in numbers.”
The annual Walk to End Lupus Now events became a cherished tradition that has connected family, friends, and more. Mario’s infectious personality garnered immense support, resulting in a team that consistently increased over the years. As Mario’s battle with lupus intensified, so did the determination of the team.
“Mario was liked by everyone who knew him so getting family and friends to show up a few times a year for a walk and to raise awareness for lupus was not hard. Mario’s co-workers would show up bright and early.”
This year’s walk will be bittersweet: it will be the family’s first walk without Mario, but their resolve remains strong, with their largest team turning out and more overall support than ever.
“We wish we were still walking side by side with Mario like we had done for the past 10 years and now we walk in his memory knowing he will still be there walking with us. Mario would want us to carry on and keep working to bring a cure to lupus. I want other families to know we feel and understand their pain and continue to walk with them to raise awareness in hopes for a cure.”
As Mario’s family walks in his memory, they offer invaluable advice to others who find themselves in a similar situation. The journey may be challenging, especially when facing the loss of a loved one, but every effort counts. Connecting with the Lupus Foundation support group network, attending meetings, and reaching out to others who share the experience are all ways to get involved to make a difference. The family’s message is simple: “You are not alone.”
If you or someone you know is looking for ways to make a difference, visit our Get Involved page to learn more ways to join the cause. To find a Walk to End Lupus Now event in your area, visit lupus.org/Walk.
This post was originally published on this site