Photo by Dayne Topkin on Unsplash
May is Neurofibromatosis (NF) Awareness Month, which is always an extremely important and meaningful month for me, as a person affected by NF - but it should matter to more than just the people diagnosed (and their families), it should matter to everyone.
In short, NF is a rare genetic condition that impacts (mostly) the nerves, sometimes causing benign growths across the body, and sometimes manifesting itself through cognitive issues as well.
Because it is a disorder that comes across a spectrum, there is no right or wrong way to have it, and the month of May celebrates and raises awareness for anyone impacted, no matter the severity.
The Tumour Foundation, (formally The Neuro Foundation) has always played an extremely important role in my life – with my dad running fifteen half marathons to raise money for the charity, myself purchasing merchandise, and all the invaluable support they have provided for me and family in the last twenty-one years.
I don’t tend to dwell on, or even think about NF in any notable way any other time of year, because, for me, it is nothing more than a fact of life, much like I was born a twin or I have brown hair.
However, I always take time during May to really think about the condition, not in a depressed, self-pitying way, but in a way that the month is for: thinking about raising awareness.
It is important that more people are aware of the condition, in May and beyond.
The charity is brilliant at organizing campaigns like ‘Shine a Light for NF’ where landmarks are lit up blue for the awareness day, which falls on the 17th of the month.
The support I have received from Nerve Tumours UK throughout my life cannot be taken for granted, so I think it is only fair that I respect and uplift them in the same way by sharing the work they have done.
I never shy away from the fact that I am a disabled journalist - it has always made up an important aspect of my university career so far, and being a disabled student was integral to my previous education, too.
In fact, I am quite proud of that fact: despite every hurdle I have faced and every challenge that has presented itself to me, I’ve overcome it.
And not only did I overcome them, but I also did that and then some.
I was never specifically told that NF would get in my way; instead, I was told, in no uncertain terms by my parents, that I should never let it.
Because of them, I was told that I would not only achieve the bare minimum, but I would smash absolutely any goal I set.
Working at any subject, at a degree level, is something to be proud of, but I always give myself a little pat on the back for doing it with a disability, too.
I am genuinely not hurt by people’s preconceptions of disability, because I know they come from a place of ignorance, but researching isn’t hard.
I’d encourage everyone to read up on NF Awareness Month this May, and even beyond, because it is a complex and varied condition, and also, I'm not Google.
I have worked so, incredibly hard for what I have and where I am now, and there will be a day when I get the accolades I deserve.
I don’t ever imagine I would be heralded as a success story for people with NF, because I am sure there are more stories other than mine, but I like to think that I could help maybe one person with NF to see there are so many incredible opportunities hat are just as accessible to them as to anyone else.
Let's get personal for a moment.
My dad, on one of his half marathons, ran with the NF sign on his back, and a handwritten message that said ‘To my brave twin daughters, who inspire me every day.’
I kept his card from that race and I think of it often, because knowing that he ran 13 miles with that displayed on his back always makes me feel special.
With NF being a lesser-known about condition, I think it’s the moments like that we overlook – the little victories and the inspiration that comes from just living day-to-day life.
In terms of the health side, I don’t mind when junior doctors come and have a look-in at some hospital appointments, and I don’t mind mentioning the condition at eye tests (boring, I know), because they’re just little experiences of a whole.
I wouldn’t ever dream answer the question I feel some people secretly want to ask: ‘do you wish you didn’t have NF?’ because I don't think there is an answer.
As I said, it is just as much a part of me as anything else, and while it has its moments where I find it an inconvenience more so than anything more drastic, I also know that I am where I am partly because of NF.
If someone learns anything from this post, about NF or just about me, I consider that a success, and I am always happy to share my story with anyone.
Happy Neurofibromatosis Awareness Month!
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