Megan’s Journey
09 October 2019
Megan's Journey
Megan-Cherise Kerr is a current undergraduate student studying Biomedical Science at the University of Greenwich. She was diagnosed with NF1 when she was 8 years old (and also diagnoses of ADHD, Dyslexia, Irlins and Dyspraxia). Here she talks about how she hasn’t let this hold her back, and about recently attending a global Neurofibromatosis Conference in San Francisco.
I have faced many challenges in my life and have had to fight my way through many battles to reach the point I am at now. For many years people have told me what they think I can’t do, without knowing what I am capable of. Now, at 23 years of age, I am continuing to fight back and prove to anyone who doubts my abilities that I can have a successful life.
Being a student at university with NF1 hasn’t been easy. I have faced many challenges the least couple of years.
On the first day of term in my second year, all of my friends were beginning the new academic year whilst I was in hospital having my fourth operation to debulk a plexiform neurofibroma on my face. This was quite a big operation which involved me missing almost seven weeks of university lectures. After Christmas I had finally caught up with everything I had missed, only to be told I needed another operation, this time to remove three other plexiform neurofibromas, throughout my body.
Despite all of these challenges I managed to finish the year with 79%. The equivalent of a First.
– Megan"Despite all of these challenges I managed to finish the year with 79%. The equivalent of a First. "
Megan with Mary Thomas, Clinical Nurse Specialist, GSTT London.

At university I am a STAART (Support Through Access Ability Retention and Transition) Ambassador. As part of this team, I provide information, guidance and support to disabled and diverse students who have concerns about going to university or are current university students. We understand that starting university can be difficult for anyone, and if you have a disability this can be even harder, but with the right support this transition can be made easier.
In September 2019 I travelled solo to San Francisco to attend the global Neurofibromatosis Conference hosted by the Children’s Tumor Foundation. Over the 4 days of the conference we heard from leading researchers across a wide range of scientific disciplines, in research and clinical backgrounds within the neurofibromatosis community. This included discussions regarding pain and itch, the future of precision health, and presentations showing the promising results surrounding the MEK inhibitor trials. Much of the research presented is so new it is currently unpublished.
As a young scientist I was inspired and my passion for research was truly fuelled. Everyone I spoke to was surprised to learn I was only an undergraduate student and they were so supportive and provided me with valuable information and guidance to further my career as a research scientist.
Attending the NF conference in San Francisco has given me even more drive and determination, and I am looking forward attending the conference next year in Philadelphia.
– Megan"Attending the NF conference in San Francisco has given me even more drive and determination, and I am looking forward attending the conference next year in Philadelphia."


Filter News

Douglas Thomson’s NF1 Story
Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him
Read More
Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith
Tricia's fundraising wingwalk in memory of her daughter Sarah who had NF1, and to remember her father Keith
Read More
Student Voice Prize 2021
The 2021 Student Voice Prize opens on 6th October! #DareToThinkRare for the 8th annual essay competition!
Read More
Centre for Appearance Research - Parent Support Materials Study
The Centre for Appearance Research is doing a study on parent support materials - can you help?
Read More
Centre for Appearance Research - YP Face IT
YP Face IT offers online support for young people with conditions or injuries affecting their appearance
Read More
Counselling support from Changing Faces
Changing Faces - Counselling support: confidential one to one support sessions for people with a visible difference
Read More
Nerve Tumours UK Community Survey
This consultation provided direct feedback to the strategy group, to look at how we can continue to provide our services
Read More
Suzi’s NF2 story
Suzi used her own NF2 diagnosis to inspire her research into how identity is experienced by people with NF2
Read More
Emma’s Story
Emma shares her journey with NF after finding out her daughter, Poppy, has been diagnosed with NF Type 1.
Read More