Imaging is another area of research. One study uses 360-degree imaging to record changes in the thousands of tumours throughout a sufferer’s body. Another pilot study is conducting whole-body MRIs for young people, which looks at how much disease is in the body. “We want to detect tumours early and identify those with a higher risk of turning malignant,” she says. Around 80 per cent of people with neurofibromatosis will get through their life without their tumours becoming cancerous but many more suffer from progressive disfigurement. To provide support, the clinic also offers laser treatment and excision for the small lumps which can develop on the skin. The national clinic is also involved in world-leading research, including a collaboration with John Hopkins University in the US to develop ways to measure treatment outcomes. Mimi is overseeing other neurofibromatosis trials and remains optimistic about the path forward. “Despite the challenges, we’re committed to advancing treatments and support for our patients. There is so much opportunity here to improve the lives of people living with neurofibromatosis.”
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