Family, friends and former colleagues gathered yesterday to give thanks for the life of Shelley Elizabeth Weir, MBE, remembering a woman whose personal battle with lupus became the catalyst for more than three decades of advocacy for people living with chronic illnesses.
The 63-year-old died on September 6. Weir lived with lupus since 1990 and, a year later, established the Hope Foundation to support people living with the disease and increase public and professional awareness.
At her service of thanksgiving at the Cathedral Church of Saint Michael and All Angels, former Minister of Foreign Affairs Maxine McClean delivered the eulogy, drawing on tributes from family, friends, colleagues and members of the medical profession. The interment followed at the churchyard of St Stephen’s Anglican Church.
McClean said no single voice could capture who Weir was, describing her variously as a daughter, sister, aunt, friend, hostess, patient and patient advocate.
She said Weir had lived with a debilitating disease for 36 years but her illness never defined her. She was active in the church choir and was remembered as outspoken, honest and sincere.
The excerpts from the tributes offered an intimate glimpse of the woman behind the public advocate.
Her sister Hazel described Weir as the “anchor” of the family, recalling that even as a teenager she was a dominant personality who naturally became a leader.
“As we got older, I recognised that she was way ahead of her time,” Hazel said.
After their parents died, Weir became the unofficial head of the family, although she was the fifth of seven children. Hazel remembered her as the family “fixer”, someone who confronted problems and sought solutions.
Her determination extended to managing her own illness. Hazel recalled that, after her lupus diagnosis, doctors recommended two hip replacement operations, but Weir insisted on having both procedures done in a single surgery. For niece Amelia, Weir was a “godsend”, her greatest encourager, champion and anchor. Amelia recalled how her aunt supported her through college, university and her career, celebrated her successes and encouraged her to pursue her ambitions. One of her fondest memories was travelling to New York with Weir as a child, experiencing her first train ride and seeing snow for the first time.
Weir was diagnosed with lupus at a time when relatively little was understood about the disease. Her diagnosis transformed her understanding of chronic illness and ultimately led to the establishment of the Hope Foundation in 1991.
Over the following decades, her advocacy expanded beyond lupus to include arthritis, sickle cell disease and other chronic non-communicable diseases. She worked to improve awareness among patients, families and health professionals and took the patient’s voice into regional and international forums.
Her contribution was recognised in 2009 when she received the MBE for service as a community activist. She also earned an MSc in non-governmental organisation management from the London School of Economics and Political Science.
Those in the medical profession she worked alongside used the service to underline the significance of that work.
Dr Cindy Flower described Weir as a “tireless and passionate advocate” who worked to improve awareness and education for patients, families and health care professionals. She highlighted Weir’s regional advocacy, including her presentation at the American College of Rheumatology annual meeting in 2022 on the experiences and challenges of lupus patients in the Caribbean.
Dr Rhonda McIntyre described her as a leader and advocate whose legacy was “unsurpassed in its influence, generosity, and lasting impact”.
Former QEH chief executive officer Dr Dexter James remembered her commitment to patient care, saying she understood that health care was ultimately about the human being at its centre. (NS)