Tuesday, May 10, 2022 marks Lupus Awareness Day, which serves to call attention to the impact that lupus has on people around the world.
Lupus Ontario is joining groups from around the world that have united to lead the annual World Lupus Day observance.
Now in its 19th year, World Lupus Day will focus on the need for heightened public awareness of lupus, improved patient healthcare services, increased research into the causes of and desperately needed treatments for lupus, enhanced physician diagnosis of lupus, and better epidemiological data on lupus globally, Lupus Ontario officials say.
Lupus affects more than just the person with the disease, it also impacts their family, friends, and work colleagues.
Still, it is widely under-recognized as a global health problem by the public, health professionals, and governments, driving the need for greater awareness. Early recognition, diagnosis and treatment of lupus help to slow the debilitating effects of the disease.
However, lupus is often difficult to diagnose because symptoms frequently mimic common illnesses.
Increasing awareness of lupus will save lives.
Brynn Clark, a volunteer an board member with Lupus Ontario, said what she needed in the start of her lupus journey was to find somewhere to read about other patients’ experience with lupus.
“What I did, was start a blog, ‘Lupus Interrupted’,” she said, in a media release.
“It was meant as a place to share my journey for family and friends. My family didn’t read it. Who read it? People from all over the world who wanted a real conversation about what it is like living with this disease. I wrote to become a patient advocate. I wrote to highlight a lupus journey filled with hardships, but rife with positive actions. I wrote for Stanford University’s medical blog, ‘Scope’, to illustrate to new doctors what living with lupus really feels like.”
Lupus Ontario is the largest Canadian provincial organization focused on improving the lives of lupus patients and their families.
Lupus Ontario’s mission is to provide vital support, education, awareness, advocacy and research through the fundraising efforts of our staff and volunteer community to help those with lupus live longer, healthier and better lives.
Clark said she joined Lupus Ontario as a volunteer and Board Member to continue her impact of advocacy.
“I didn’t like the hand I’d been dealt in life, so I changed the game,” she said.
“My epiphany came when I realized that at the end of the day, it’s only my choices that will determine whether this life will be remembered and measured in pain, or in memories. I am an on-my-own mother of five, managing the best that I can with what I’ve been given. My wish for my children is that they be educated on patient rights, and compassionate to the journey of others, no matter their circumstance or afflictions.”
More details can be found at https://www.lupusontario.org/.
