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Launched in January 2024, a new multi-disciplinary clinic at CHEO is the first of its kind in Canada to help children with neurofibromatosis and their families by transforming complex, busy care schedules into one appointment.
NF1, the most common form of neurofibromatosis, is a rare genetic condition that causes benign tumours to grow in and under the skin, often with problems involving bones, hormones and other parts of the body. It typically affects almost one of every 3,000 births and half of all diagnoses involve learning disabilities.
Families have had to spend a lot of time on long-distance trips to specialized NF1 clinics at SickKids in Toronto and CHU Sainte Justine in Montreal, as well as additional appointments at CHEO.
Those clinics provided specialized care for NF1, but they didn’t have all the necessary specialists in one location. Pediatric oncologist Dr. Nirav Thacker thought a dedicated, multi-disciplinary NF1 clinic at CHEO would significantly improve the experience for children, youth and families.
“Our [families] have to see so many different people, which can become challenging when you have to come back over and over again,” said Shanika Abraham, director of hematology/oncology at CHEO. “Our approach is to bring clinicians to see the patient, which simplifies the health-care experience and removes barriers such as taking time off from work and the costs of all the travel.”
Physicians from departments like pediatrics, oncology, neurology, genetics, plastic surgery, ophthalmology, radiology and others now come together to treat common patients, which also helps improve the care they provide.
The clinic has been life-changing for Jessica and Jacob, whose five-year-old daughter Audrey was diagnosed with NF1 and rhabdomyosarcoma, a soft tissue cancer, when she was an infant.
“When we started this journey there was not even ... a twinkle in their eye that we were going to have this clinic,” said Jessica, lauding the continuity of care they now receive. “I can't even really express how good that feels. ... It is a big deal.”
The clinic can currently treat four to five children during the monthly clinic, which lasts about four hours. Thacker said he hopes to one day expand the clinic to care for all CHEO’s NF1 patients.
For now, physicians must block off time from their busy clinic schedules to participate in the NF1 clinic, and they need additional support and resources.
“It’s just their perseverance and determination to do it, which is fantastic,” Abraham said of the physicians involved.
David Levesque’s 13-year-old son Hayden will also benefit from the new clinic.
Hayden, who his dad calls "one of the funniest and most resilient human beings” he knows, has NF1, scoliosis and moyamoya disease, a disorder that limits blood flow at the base of the brain causing developmental delays.
David said he’s thankful the NF1 clinic will make it easier to manage Hayden’s complex care plan.
“It's going to be something that's going to really help us,” he said. “It'll be like a one-stop shop.”