Muskaan is a medical student at University of Toronto, and is also a graduate of the BHSc program at McMaster University. She is an avid supporter of mental health initiatives and is extremely interested in the field of psychodermatology: the connection between the mind and the skin. Through initiating and leading the Neurofibromatosis project, she aspires to understand the cutaneous manifestations of the condition and their effect on the patients’ mental health. She is a certified Zumba instructor who spends her free time learning different languages.
To contact Muskaan for further questions, reach her via email: email@example.com
The cutaneous symptoms of NF1 can impact many people’s daily lives and mental health. Individuals can choose to undergo surgery to address their concerns, but the procedures are not covered under the Ontario Health Insurance Plan (OHIP) as they are considered cosmetic procedures.
Consequently, the cost of such procedures may act as a barrier to those who would like to improve their quality of life, further worsening their mental health.
With this survey, it is our vision that the information collected will improve awareness about the various challenges associated with cutaneous symptoms of NF1 and alleviate the burden of surgery costs. Through this project, we hope to improve the physical and mental wellbeing of those affected by the skin-related symptoms of NF1.
International NF Skin and Mental Health Survey
The International Neurofibromatosis Skin and Mental Health Survey collects information about Canadians living with neurofibromatosis type 1 (NF1) and their experiences with this disorder, particularly regarding cutaneous (skin-related) symptoms and their impact on mental health.
The information gathered will then be analyzed and drafted into a report that will be used to better inform the public and the government about the cutaneous symptoms of NF1 and its mental health effects.
2018-2019 Survey Results
Patient Stories Book
We believe that storytelling is a powerful tool in memorably and accurately illustrating the particular struggles individuals with NF1 encounter. With this in mind, The International Neurofibromatosis Skin and Mental Health Project is culminating a catalogue of stories shared by individuals impacted by this condition. Our aim is to use these stories to inform debate and discussion pertaining to the impact of cutaneous symptoms on patients' mental health.
We are currently accepting submissions. If you are someone that has been affected by NF in any capacity, we would love to hear about your experiences. This includes, but is not limited to: individuals that have been diagnosed with NF, caregivers, family members, friends, allies and healthcare professionals. Please provide your details in the form below so we can be in touch with you about the proceedings of the book.
The International Neurofibromatosis Skin and Mental Health Project also documents the lived experiences of attendees of the annual Neurofibromatosis Camp Weekend using a video. Through this initiative, our goal is to bring a broader, deeply engaged and nuanced view of the multitude of ways in which the quality of life of individuals with NF1 is impaired due to its cutaneous manifestations.
2018 NF Camp Video
Prepared by Francis Lao, McMaster University
If you have any further questions, feel free to contact team lead Muskaan Sachdeva: firstname.lastname@example.org