Dammy Ogunseitan is a longtime soccer fan who’s recently been able to travel across Europe to watch his favourite teams. It’s far cry from the way he’s spent most of his life: hospitalized and in pain from a chronic illness.
When Dammy was diagnosed with sickle cell disease at six months old, doctors told his mom he wouldn’t live past 18. He defied the odds and recently celebrated his 40th birthday, thanks to medical advancements and the staff at St. Paul’s Hospital.
Today, Dammy’s life has transformed from being in constant pain to receiving an education, forging an exciting career, having a wonderful marriage and – most importantly to him – being a dad to his six-year-old son.
“I wouldn’t be here if it wasn’t for St. Paul’s Hospital,” he says. “They made this all possible.”
Searching for a better treatment plan
Dammy moved to Vancouver from Nigeria at 18 years old, following his mother who had left their home country a few years earlier because of political persecution. She worked three jobs to bring him to Canada.
She’d chosen to live in Vancouver because after researching the globe for the best physician to help her son, she found Dr. Linda Vickars: a hematologist and leader in sickle cell disease care.
Sickle cell disease (SCD) is a genetic red blood cell disorder. Irregular, c-shaped red blood cells become sticky and rigid, blocking blood flow and causing relentless pain – also known as “pain crises”. Often, patients must visit an emergency room to seek treatment for pain management. The disease may also cause head to toe chronic complications including strokes, blindness, renal failure, and respiratory failure.
“The way I explain it is most people have broken something or torn a limb,” Dammy says. “So, imagine breaking your hand, and you keep shaking it and don’t stop. With sickle cell disease, that is the amount of pain you’re in constantly. And you need strong meds just to get you to a place where you’re not screaming in pain.”
Under Dr. Vickars’ care, St. Paul’s Hospital is the place that gave Dammy and his mom hope. “She was the first doctor ever to tell my mom, ‘Let’s not focus on death. Let’s focus on quality of life’,” he says.
From waiting to die to actually living
At first, Dammy visited the emergency department every three months for treatment. He had painful, debilitating episodes that left him unable to function. Every visit, he would spend several weeks in hospital trying to recover. As you can imagine, that severely limited Dammy’s quality of life.
“I was like, it’s just too much. I would rather not feel this at all,” he recalls. “And not just that, but I didn’t want people who care about me crying, and to feel that sadness and hurt.”
Dr. Vickars pressed forward with innovative treatments. She didn’t just want to treat his pain – Dammy describes how she concentrated on solutions that would help him feel better in between hospital visits, and created better plans so if he did need inpatient hospital care, he wouldn’t have to stay as long.
And she was the first to encourage Dammy to think about his future and what he wanted to do with his life. They talked about school, a career, a family – all the things he never expected he would have.
“It was a life-defining change,” he says. “I’ve gone from someone who was literally just waiting to die to someone who is actually living. And I’m alive because of St. Paul’s Hospital.”
Dr. Vickars isn’t the only practitioner who had an impact on Dammy’s experience. Over the last few decades, numerous doctors, nurses, specialists, and allied health professionals – many of whom have known him since he was a teenager – have been by his side and helped keep him healthy.
Since SCD can cause head-to-toe complications, they ensure he gets regular checkups with varied specialists. If he needs emergency care, they are prepared with a custom pain plan to facilitate a seamless hospital experience. When he was ready to have a child, they jumped in with a strategy and adjusted medications.
“The hospital is a fabric of support for me,” says Dammy. “Staff always tell me no matter what your life looks like, and there will be difficult moments, we’re here to support you and help you live the best life possible.”
Sadly, Dr. Vickars passed away in 2014 – but her legacy lives on through patients like Dammy, as well as the Naiman-Vickars fellowship that supports advanced training in classical hematology for new physicians.
Dammy is currently under the care and expertise of hematologist Dr. Hayley Merkeley. With advancements in treatments and the committed health care teams who developed a specific treatment plan for Dammy, his episodes have now been reduced to once every couple of years.
“Giving people like me a chance to survive wouldn’t happen if we didn’t have such dedicated individuals at St. Paul’s Hospital working to better people’s lives,” he says.
Leadership in sickle cell disease
The Red Cell Disorder Program at St. Paul’s Hospital is a leader in providing compassionate, patient-centric care to people with SCD and thalassemia across BC and the Yukon. This patient population – totaling about 400 – is unique, comprised mainly of communities of colour who may be new immigrants or refugees. In addition to the severe pain they experience as part of their health conditions, they can face economic challenges, systemic racism, and language barriers.
Since 2018, the number of patients seeking care for SCD at St. Paul’s Hospital has quadrupled. Many have medical trauma from negative experiences with the health care system, and patients frequently report that St. Paul’s is their preferred hospital due to the kind, empathetic, and understanding care they receive.
“Studies have shown that people living with SCD have poorer quality of life than those receiving chemotherapy for cancer,” Dr. Merkeley says. “It is essential that patients receive compassionate care from a multi-disciplinary team to support their physical and psychological health.”
Ongoing clinical trials at St. Paul’s Hospital are exploring new medical treatments and quality of life improvement projects for people with SCD, and the team is collaborating with major sickle cell centres in the US and Canada to examine pregnancy outcomes.
A milestone gene therapy called Casgevy is a huge leap forward, and was recently approved for use in Canada. It provides a functional cure for people living with thalassemia and SCD.
Although approval from Health Canada is a major step forward, the next barrier to overcome is creating an infrastructure that can support patients through treatment with Casgevy, which includes intensive chemotherapy, relocation to a transplant centre for one month, and fertility preservation. Resources exist for patients with cancer who receive similar treatments, but not for patients with SCD and thalassemia, despite the severity of these conditions.
Dr. Merkeley is currently involved in long-term Casgevy trial for thalassemia patients, and looks forward to when her eligible SCD patients can receive it, too.
“It is truly an exciting time to be working in this field, especially since advances in care and improvement in the lives of patients are long overdue,” she says. “None of the advances we have seen would be possible without dedicated advocacy and research funding. We are excited to see progress towards a national bill supporting people with sickle cell disease and increase in access to clinical trials in Canada, including at our hospital.”
Giving back to St. Paul’s Hospital and St. Paul’s Foundation
Dammy is currently living life to the fullest. One of his favourite activities is playing soccer with his son, who just started the first grade.
“We’re in a good place. I’m very lucky to have the life I have now and be able to take care of my family,” he says.
As a senior director of a strategic communications firm in Vancouver, Dammy decided to use his skill set to give back to the community. He’s a member of St. Paul’s Foundation’s Future Leaders, an engaged committee of young professionals who commit their time to raising awareness for the need to support the ongoing transformation of health care in British Columbia.
He wants to ensure that everyone has access to high quality care now, and well into the future at the new St. Paul’s Hospital on the Jim Pattison Medical Campus.
“It’s about making sure that the hospital is here for generations to come,” he says. “The people who came before us made sure it was here for us. That’s why I’m still here and alive.”
Your gift to Lights of Hope, our largest community fundraiser of the year, saves and changes lives like Dammy’s. It makes possible innovative research, compassionate care for patients, and life-enriching activities for residents in long-term care.