President of The Hope Foundation Shelley Weir has passed away.
Weir, who was diagnosed with lupus back in June 1990, died around 4 a.m. today. She had been hospitalised for the past month. She was 63.
Scientifically known as systemic lupus erythematosus, lupus is a chronic autoimmune disease that causes inflammation of connective tissues and in severe cases can affect every organ and tissue of the body.
It was in May 1991 she formally launched the foundation in the interest of people afflicted with lupus, sickle cell anaemia and arthritis.
Over the years, Weir tirelessly sought to educate the public and improve the lot of people suffering from the three non-communicable disease.
“I guess seeing the challenge that it presented – being told initially that I would hardly live past the next week if I didn’t get on medication; having been in intense pain and going through the different symptoms that presented prior to diagnosis; and then to learn that it was this condition called lupus – inspired me to make sure that other persons would have an easier time being diagnosed,” she said in a 2010 interview.
“I tried to reduce that sense of hopelessness that people would feel can come with something such as lupus . . . . We wanted to get an organisation going to bring people together for this cause.”
For championing the cause of lupus and sickle cell anaemia sufferers in Barbados and the Caribbean, she received an MBE (Member of the Order of the British Empire) in the Queen’s Honours List in 2009.
She also organised an annual Walk For Lupus to raise awareness as well as improve the quality of life of those diagnosed with the illness. It was usually held in the last Sunday of August, though not for the past two years.
In a statement, the Hope Foundation said the loss was immeasurable. “We have lost our founder, a relentless patient advocate, a fierce leader and loyal friend – a true force of nature.”
It said Weir life’s work changed the landscape of patient advocacy in Barbados and helped give a stronger voice to people living with chronic illness across the Caribbean region.
“Shelley became the first non-medical person to chair the Patient Care Committee of the Board of the Queen Elizabeth Hospital, bringing the patient’s perspective into a space traditionally occupied by health care professionals. Her knowledge and experience also made her a sought-after advisor to patient organisations across the Caribbean, where she shared Hope Foundation’s model and supported the development of similar groups . . . .
“Yet, for all her accomplishments, positions and accolades, Shelley’s greatest legacy is found in people she helped. The scared, newly-diagnosed patient who discovered that they did not have to face their illness alone; the caregiver who finally felt seen; the patient who learned to ask questions, understand their condition and advocate for better care; the organisations she helped to strengthen and the conversations she helped to change.
“Shelley understood that patients should never be passive participants in their health care. She spent 35 years ensuring that their voices were heard.” (BW/PR)
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