288/365 – Solving the unsolvable

On my first day of annual leave for several months, Elaine and I spent a chunk of it at Bletchley Park. If the name is familiar and you’re not sure why, BP is where the enigma code was cracked in WW2 by Alan Turing and his gang of geniuses. 

Enigma machines were used to encipher the content of Nazi messages and were thought to be unbreakable. In the museum, the scale of the challenge was stressed over and over again. The way the Germans used the enigma machines, which had been originally created by a Dutch company for the financial sector, meant that there were always 72 million million different combinations meaning not even the  collective brainpower of the smartest people in Britain could solve these puzzles without mechanical help. So, as anyone who has seen the Imitation Game knows, Turing and co created a machine to work through all the possible combinations and they cracked it. 

It made me think about the environment that is necessary to ‘solve the unsolvable’. Naturally in this blog, I’m considering how we find out what causes myasthenia gravis and how we cure it.

1. A lot of money

During WW2, Winston Churchill knew the value of code breaking and he ordered that no expense be spared to crack the enigma. With that kind of backing, the impossible was shown to be possible – with money to spend on trialling different techniques and scaling up the number of people focused on the task. While not all there for cracking the code, there were around 9,000 people working at Bletchley during WW2. That is obviously not the reality for myasthenia. 

As MG is a rare disease, curing it is not a matter of national/international importance. Research needs to be funded and there is constant competition for this money. So funding research is often left to charities like Myaware in the UK and the Myasthenia Gravis Foundation in America. That’s why fundraising and spotting opportunities to link charities to business for sponsorship is so important within the myasthenia community. The money you raise could help find a cure. 

On the other hand, even if a ‘cure’ is found, there is the question of whether the NHS would be able to afford to supply it. As discussed previously, there is research happening in Switzerland about a vaccine for MG. I’ve asked my consultant to look into it but even if it is found to be successful, whether it would be offered in the UK depends on funding.

2. People willing to take risks

The people involved in cracking the enigma code were willing to fail over and over again to find a solution. Like our modern day researchers, there was pressure on them to succeed but they didn’t let it stop them nor did Alan Turing seem to listen to the criticism.

When it comes to MG, you need both researchers and patients that are willing to take risks and push boundaries to help find a cure. That’s not an easy ask – it takes people who are willing to learn from failure.

3. Commitment 

Anyone responsible for creating something ‘unachievable’ has been obsessed in the process. Nothing less than obsession helps them push through the heap of others that have tried and failed. To allow something to become your obsession, it often needs to be personal – will this change your life or the life of someone that you love?

Most days I have a moment where I wish I had been more interested in science growing up. If I had been, I reason, I would be in a position to help myself and others with myasthenia. Bit of a jump I know and while it’s not too late, I doubt I will go back to re-train as a scientist. However, I believe the myasthenia community will benefit from the more young people with MG or who’s parents have MG that we can encourage to be scientists, doctors and researchers.

4. A bigger cause

As mentioned in point 1, curing myasthenia will never be seen as a national or international priority because it is one of many rare diseases. But could we have more success if we worked together with say all of the other auto-immune diseases on reasons why conditions related to the immune system are caused? Or clubbing resources to work on a cure? Now that would be of national significance. 

I’m sure there is ongoing work around this already, but as I said these are some observations about the climate for ‘solving the unsolvable’.

268/365 -Myasthenia gravis around the world

Facebook is a wonderful thing not least because of all the interesting content that gets shared by the people we choose to surround us in the virtual world. Last week, one of my connections, and a member of Myaware, posted this fantastic map of Myasthenia Gravis around the world.

Hosted on the disease map website, this crowd sourced map asks people to add themselves and you can see that there are very few continents which aren’t touched by MG – Asia looks like the least affected but I imagine this may not be translated into different languages?

 
As you can see from the image above, the purple sign of women dominate this map so if you are a male with myasthenia please add yourself to it so the tool gives a better reflection of those affected around the globe. This is probably due to the fact that MG tends to affect women at a younger age and they are more likely to be digitally savvy due to being younger.

When you zoom into the map, you can click on the individual people to see the information they have added (like the image below). This means if it reaches a wide enough audience this map might even be useful for research or collaborating on awareness raising/fundraising around the globe. It may also be useful to see if there is someone near tou with the condition – it help us feel less alone . 

If you haven’t already added yourself to this map (which I haven’t) then please do so if you feel comfortable.  

183/365 – What’s next after 365 days of myasthenia

As I’m now past the halfway mark in this year of blogging, I’ve been thinking about what happens after the 31st of December. While obviously nothing is certain at this point, and it may well be that this blog will remain a product of 2015, I’ve got a couple of ideas which I’m keen to see what you think of. 

I was thinking about:

A) Trying to get people with MG/OMG/CMG from around the world to do seven day stints of blogging about their life. Whether they wanted to do it anonymously, or in the same manner as I have, would be completely up to them. I thought with this, as a community we could try to push the following hashtag to continue to raise awareness of what it’s like to live with MG – #7daysofmyasthenia.

B) Trying to get a similar kind of blog, but again weekly rather than daily, linked to the myasthenia or muscular dystrophy charities.

C) Trying to get a column linked to a health magazine.

D) Keep the blog going but keep it sporadic – when and if I have something new/interesting to write about. 

At the moment, A) is my preference because I think it would be great to have a place to bring the world MG community together and share experiences. It would also showcase how different everyone’s MG is and how diverse people with the condition are. Obviously it would depend on having enough people up for writing for it – would you be interested? If you would be, can you drop me a comment below? 

If you think it could be something you would consider, I would be happy to help in anyway you need – set some guidelines, edit, provide advice about topics etc. 

150/365 – Feedback so far

As today is my 150th post, I thought I would take a look at the feedback I’ve received so far while relaxing on San Sebastián’s Playa de la Concha. You may remember I asked in post 138 for readers to provide me with a bit of information on whether they have myasthenia or not and then answer a few questions. If you haven’t done this already, it can be done here. 

Thank you to those of you have contributed. 17 of you have responded to the question about whether you have myasthenia or not, with a split of 65% yes and 35% no. 

  
This is positive for me as I’m keen to reach people with myasthenia, and hope they’ll share their experiences with me, and those without so they learn about the condition. 

For the second part, 18 of you have taken part. 

The first question asked, after name and email, is how you found out about the blog. The answer provided an interesting split, with 6 people hearing about it through Myaware, 5 through word of mouth, 4 through social media, 2 through other and 1 through search engine. 

The second question asks if you feel you know more about myasthenia from reading the blog. All except one said yes which is extremely positive. The no answer (below) was also positive but gave me food for thought in terms of how I improve what I’m doing. 

‘Not really about MG, more about your experience with MG and how it relates to the things in your life, some of which I have been able to take away and use to my benefit. ‘

Finally, I ask whether you would feel more comfortable speaking to people about myasthenia about reading the blog. 14 people said yes, 3 said maybe, 1 said not sure and 1 said ‘not  if I didn’t have knowledge base I do’ which again has helped me with my plan for improvement strategy.

Next steps

Based on the feedback, I think to keep improving what I am doing I will create an information page about myasthenia and add a link to it at the bottom of each blog post. If there is anything you think should be included in this please let me know in the comments at the bottom.

On this page, I will link to other useful websites, support groups and also other blogs about living with the condition. If you would like yours included, please comment below or email me on laurnacr@hotmail.co.uk.

Thanks again for all your feedback and if you haven’t provided feedback yet it would be great if you could spend 2 minutes soon so here.

138/365 – Collecting your feedback

So I’ve finally managed to create a feedback section for this blog to capture more information on my readers. It’s available here and will be tagged at the end of each blog from now on. 

I’m asking people whether they have MG or not in a poll. In a separate feedback form I’m asking for name, email, whether you better understand MG after reading this blog and whether you would consider talking to someone about MG after reading this blog. I think I’ll add a comments box on there too with a prompt for additional feedback and any ideas for future blog posts. 

I’m keen to find out the breakdown of readers and whether I am equipping them with enough knowledge to speak about the condition. I’ll be able to take stock of this shortly.

If you could fill out the feedback form it would be greatly appreciated. Here is the link again. Thank you, danke, gracias. 

137/365 – Raising awareness via Twitter competitions

Yesterday I received an interesting tweet that is definitely worth writing about. After entering a competition to win a pair of New Balance trainers on Twitter, I received a response from the company’s account. The sports brand has asked people to tweet reasons why they enjoy running with the hashtag #useyourrun. I decided it was a good opportunity to raise some awareness about myasthenia, and also  potentially win a new pair of top of the range sneakers, so I tweeted:

I run to keep on top of my #myastheniagravis

While this is true, I had also hoped that people looking at this feed would be curious and click on the MG hashtag. What has happened, if it comes true, is even better.

New Balance asked me to follow them so they could direct message me. They then asked whether I would allow my tweet to be part of a campaign they are running with the Hearst magazine group. As in the company that owns Vogue, Men’s/Women’s Health etc. Not only will the Twittersphere be curious about MG, but hopefully so will the thousands of readers of these magazines. I would say that is #winning at its finest.