Amber loves going to the mountains and cuddling with her dog. She is vibrant, funny and managing multiple rare diseases with the help of her team at the Stollery, has made her resilient.
Since Amber was little, she has faced many challenges and has had ongoing issues with her stomach, with pain and with persistent viruses that have always lasted her longer than her peers. Nausea, pain and subluxations – partial dislocation within the body – are all a part of her daily life.
After many years of doctor appointments and a lot of unanswered questions, Amber received her primary diagnosis of Ehlers Danlos Syndrome in 2019. Every piece of connective tissue in her body is affected. This diagnosis has also led to multiple other diagnoses over the past few years. With an autonomic nervous system disorder, Amber struggles with day-to-day activities and receives weekly IV infusions at the Stollery to help manage her ongoing symptoms. Amber has a Stollerific team of specialists who work with her in all areas of her growth and development. She loves her nurses and doctors, and they love her right back! Sometimes Amber sleeps through appointments and other times she chats with the nurses, filling them in on whatever is going on in her life.
Each day has its struggles for Amber, some weeks are mild while others are extraordinarily difficult. Knowing the Stollery is right in their backyard brings Amber and her family comfort knowing the level of care that is provided as they navigate her rare diseases together.