20/365 – Rare Disease Day

Rare Disease Day is coming up next month, 28 February, and I’m going to be helping Myaware try to give myasthenia gravis a publicity boost.

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Why is raising awareness important? In my experience, around nine out of 10 people I’ve spoken to about my MG have never heard of it. I’m not just talking about lay people – many medical professionals I’ve spoken to since being diagnosed have had no knowledge, or very limited understanding, about the condition. This includes people working in eye hospitals, opticians and doctors. These are the people who are responsible for recognising the condition and diagnosing it and their lack of awareness is a big problem.

QUICKER DIAGNOSIS
By improving the general population’s awareness of myasthenia, Myaware is trying to educate people to recognise the symptoms. Quicker diagnosis means quicker treatment and getting on top of the symptoms early is key to having more control over them.

This is an international day of celebration and awareness raising. It is a big chance to shout out about myasthenia gravis and I’ll explain how you can get involved below.

Myaware estimates around 10,000- 12,000 people in the UK and Ireland have the condition, however local authorities don’t seem to hold data about the condition (my partner spent a lot of time on FOI requests). This is one area where charities like Myaware or Muscular Dystrophy could be campaigning for more to be done – regional data would be very useful to help understanding more about the condition and any changes over time.

FUNDING
With more awareness, it would also be easier to get businesses involved in corporate sponsorship. As any of you who have done sponsorship activities know, it’s difficult to raise money. The Myaware fundraisers work hard to raise cash and this funds research, information conferences, support groups and the general running of the charity. But imagine if there was less need for individuals to fundraise because businesses were coming to the charity after reading/hearing about the condition. While that might be a pipe dream, at least if people in business corporate social responsibility teams have heard of MG, they may be more willing to open discussions with the charity. This can only be a good thing.

PUBLICITY
As I’m working with the Myaware team to put together a press releases for local and national press ahead of Rare Disease day, I need case studies about people living with the condition in the UK. For anyone who knows the media, you’ll know the more interesting your story is the more likely it is to be published. I know the thought of being in a newspaper is embarrassing, however, by allowing your story to be told, you would be helping raise awareness about the condition. This means you are essentially making life easier for future generations of myasthenics. So, you could consider yourself a myasthenia superhero! If you think you would like to get involved if you can contact me on laurnacr@hotmail.co.uk or email Sarah Hindley on sarah.hindley@myaware.org.

HOSTING AN EVENT
Looking at the Rare Disease Day website, it appears there are a few events happening including parliamentary receptions at the House of Commons, at the Scottish Parliament and at the Welsh Assembly. However, for those of us unlikely to be invited along to any of these events, hosting an event could be a good way to celebrate the day and get a bit of publicity in local press by letting them know what you are doing. I’m going to ask via the Myaware Facebook group whether anyone would be up for meeting in London on the day, but if stay elsewhere perhaps you could consider organising an event of your own?

PHOTO
The day website is encouraging people to take photos of groups with their hands raised. If you could get a group together to do this and share it on social media with the two hashtags #rarediseaseday and #myastheniagravis you’ll be raising publicity. If you can do it with a Myaware t-shirt on, or something to shout about myasthenia like a sign, that would be even better. The more people who do this on the 28 February, the more awareness we raise.

TWEET TWEET
As suggested above, if you can tweet on Rare Disease Day with #rarediseaseday and #myastheniagravis you’ll be raising awareness about the condition. You could share experiences about what it’s like to have MG or simply link to Myaware’s website.

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