Project Lead: Ishaan Sachdeva

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Ishaan graduated from Brock University with an undergraduate degree in Health Sciences in 2023. He is a published author and an avid supporter of mental health initiatives.

Through the Neurofibromatosis projects, he aspires to understand the condition's effect on the patients’ mental health. He is a certified Tai Chi instructor who enjoys listening to stories and meeting new people.

Further Resources

Collaborators

Mission Statement 

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.

2019-2020 Book

Documentary

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

2019 NF Camp Video

Prepared by Aljeena Qureshi & Bella Reis, McMaster University
If you have any further questions, feel free to contact team lead Muskaan Sachdeva: [email protected]