Ella’s Story

My name is Ella, and I am 20 years old, studying for a BSc in Accounting and Finance at Anglia Ruskin University (ARU). Living with Neurofibromatosis Type One (NF1) is a unique challenge each and every day. As I come to the end of my second year, I wanted to share my personal experiences of dealing with NF1 at university: covering the hurdles of disclosing my condition to lecturers and other university staff members, the challenges of making new friends, learning to be independent, and the struggle of getting to lectures.

One of the earliest and most daunting tasks was deciding when and how to tell my lecturers about my condition each semester. As many people with NF1, NF2-SWN, and Schwannomatosis know, these conditions are not well-known, and I was apprehensive about how they might react or whether they would understand the implications it has on my daily life. I worried about being seen as different or needing special treatment. However, I knew that to receive the necessary accommodations, I had to be upfront.

Approaching lecturers with this information required a lot of courage. I decided to speak to my lecturers after my lessons were over and everyone had gone because I wanted it to be private and for them to understand how NF1 might affect my academic performance. Most (though not all) of my lecturers were understanding and supportive, which alleviated some of
my fears. Nevertheless, the process was emotionally exhausting, and there were times when I questioned whether I should even mention it at all.

I believe that within the first few weeks of starting university, it is vital that you speak to your disability team, as they are very welcoming and supportive. They want you to succeed at university, have a great time, and graduate with a degree. They have put support in place, as well as the Disabled Students' Allowance (DSA), which will help me throughout my studies. I can go to my Disability Officer at university at any time, for example, when I’m having issues with lecturers who are not very understanding of medical conditions, and she will contact them. They may never reply to her, but you have to at least try to get the help you need. My university experience with Neurofibromatosis has been a rollercoaster of challenges and victories. While there were numerous obstacles, each one taught me valuable lessons about resilience, self- advocacy, and the importance of a supportive community.

DSA is an allowance (not a loan) to help disabled students throughout university by supplying technology and support. As I am physically and mentally disabled and can’t walk far, they make sure I have a supportive chair and a computer with built-in features to help me record lectures when I am not well. Disclosing my condition to lecturers was a very significant milestone in my journey through life. Living with NF1 at university has not been easy, but it has shaped me into a stronger, more determined individual. For anyone facing similar challenges, remember that it's okay to seek help, be honest about your needs, and, most importantly, believe in your ability to succeed despite the hurdles.