296/365 – Blogging and myasthenia

We’re a talented lot and one of many things that people with myasthenia do well is blogging. There are a selection of fantastic blogs out there and I’m always coming across new ones – this week’s find was I’m not MYasthenia which the author describes ‘as a journey through the unknown’. It passionately captures all the other things that come before MG in the author’s life. One of the Myaware staff recently joked there should be a group on blogging and it made me think about what the benefits of blogging are. I’ve picked my favourite three things. 

Being able to put others at ease

When I decided to set up my 365 days of myasthenia blog at the end of the last year, I had come across a few good blogs describing what life is like with the condition. Some of those were about helping people cope with their feelings around this strange condition, while others were written to raise awareness and help others struggling to cope. Some combine all three in one as I aim this blog to do. However, I never came across these blogs when manically searching what the hell MG was all about  – they came later through support channels or specific hashtags on social media.

I wanted to create a blog that would pop up in those first few terrified searches and I’m glad to say that search engines are my main source of traffic now. I hope this means I’m reaching people when they need information on what it’s like to actually live with the condition. 

Heightened awareness about your condition

A lesson I learned in my university creative writing class was that when you’re writing about something your attention to detail is heightened. You are looking for the nuances and this give you a heightened sense of awareness about everything around you. It’s exactly the same in the case of blogging about myasthenia. I’ve noticed and learned a lot over the last year about my MG and the condition generally.

Small world

Gone are the days of only knowing the people in your local support group (if you have one near you). If you are involved in any kind of online community, you can speak directly to people all over the world with, and about, MG. This has been the case for my blog and it’s been enlightening hearing about different treatments and ideas from across the globe. 

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’.

284/365 – Exciting line up at Myaware conference

Next month, people from all over the UK and Ireland will travel to Birmingham for the annual Myaware conference for people under 40. 

I wasn’t sure that I was going to attend as every weekend up until Christmas has something on for me at the moment and, just looking at the schedule, I feel like I need a break. However, the lovely community, Myaware’s Sarah and the interesting line up have convinced me to attend on the Saturday. 

The agenda is:

11am-11.15am: Coffees and Registration

11.15am-11.20am: Introduction and Welcome

Sarah Hindley, Regional Organiser, myaware

11.20am-11.30am: Icebreaker Session

Sarah Hindley, Regional Organiser, myaware

11.30am-1pm: Keynote Speech, including Questions and Answers

Dr. Fiona Norwood, Consultant Neurologist, King’s College Hospital, London

1pm-2pm: Lunch

2pm-4pm:Optional Workshops – see below

4pm-4.25pm: Charity Update

Ruth Ingledew, Chief Executive Officer, myaware

4.25pm-4.55pm: Tai Chi and Meditation for Myasthenia

Heather Lomas

4.55pm-5pm:Raffle results and close of day

Sarah Hindley, Regional Organiser, myaware

6pm-8pm: Dinner – thestudio

10pm: Taxis to the Eaton Hotel from thestudio

Optional workshops:

• Employment, Finances and Myasthenia -Steve Bradshaw, Benefits Officer, myaware
• ‘Mind over Matter’ – Robert Heaven, Counsellor, myaware
• Managing Myasthenia Day-to-Day – Mary Quirke, Specialist Nurse, John Radcliffe Hospital, Oxford
• Diet and Myasthenia- Farah Suleman, Dietitian, Queen Elizabeth Hospital, Birmingham

The weekend away takes place on the 21 and 22nd November. For more information, contact sarah.hindley@myaware.org

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.  

257/365 – Better treatment on the horizon?

For anyone else who gets Google news alerts for myasthenia gravis, you may have felt a flutter of excitement yesterday. After a busy day, I only picked up the article tonight on the train to Edinburgh. When I read the words ‘better treatment’, I blanked out the rest of the headline. 

The article by news-medical.net was focused on a grant provided to Dr. Jeffrey T. Guptill, MD, MA, MHS, Assistant Professor, Department of Neurology, Duke University, by the Myasthenia Gravis Foundation of America. It states that they ate seeking ‘a better more targeted’ style of treatment – apparently most of the treatments at present aren’t very targeted (no shhh Sherlock). This would apparently mean less negative impact on the immune system, fewer unnecessary side effects and infections.

The grant will allow the team to investigate immune system pathways and cells that show evidence of MG. The article said:
‘This is important because there are existing drugs that target these pathways, so if it can be determined that they are useful, it would pave the way for clinical trials for certain drug therapies.’

Another part of the treatment will be creating a ‘multi-center research network of MG centers to develop a repository of MG blood samples for use in future studies’ – wonder if UCL will be involved in that, where I recently put myself forward to be part of a research database. 

The idea behind this is that this network could be of wider benefit than just for people with MG – it  could be used for studying other autoimmune diseases, creating a ripple effect to improving treatments in other areas.
While I’m not getting my hopes up about any rapid improvements to treatment, it is good to hear that the medical community recognise there is an issue with the hit or miss type of treatment at present. Targeted treatment 

241/365 – Checklist for when you first get diagnosed with myasthenia gravis

It occurred to me today, while finally getting around to sorting out my driver’s license, that it would be really helpful to have a checklist of things to do when you are first diagnosed with myasthenia. The first few months after diagnosis are very confusing and I know I would have appreciated anything to make it easier. I’m pictured above in my first months of MG unable to take my sunglasses off even at night. Here’s me today.   

Below is the work-in-progress checklist for people in the UK (please get in touch if there’s anything I’ve missed and I’ll add it on): 

• Book an appointment with your GP: If you haven’t already done this, book an appointment with your doctor so you can get referred to a neurologist/specialist/consultant. It’s also useful to update them about your condition as it’s likely you will be getting your prescriptions through them.
• Allow yourself time to grieve: No matter how you take the news about having myasthenia, allow space to grieve in your own way. The worst thing you can do is be hard on yourself at this time – whether you can’t stop crying, you’re numb or you want to fight it head on, be kind to yourself during the acceptance process. 
• Identify support – No matter how cool you think you are with the condition, it’s important to have people you can lean on during the weeks and months that follow. 
• Get involved in a support group: No matter how many supportive people you have around you, there are certain things they won’t be able to fully understand unless they have myasthenia. Getting involved in a support group, like Myaware in the UK, can help you through the process of acceptance. If you don’t feel strong enough (physically or mentally) for a meetup, you can get involved online via the various Facebook groups.
• Read up on your condition: Myaware has lots of information on myasthenia, medication and coping with your new condition (not as scary as other material you may get when you google).
• If you’re struggling to cope, get free counselling: If you are struggling to cope with your diagnosis, Myaware offers free counselling to members or ask your doctor about free NHS counselling. It’s a big change and it’s ok to ask for help to get through it.
• Notify the DVLA about your condition: If you drive, you’ll need to fill out a CN1 form to alert them about the change in your health. They will ask your consultant and doctor if you are fit to drive. 
• Claim your NHS card to get free medication: More information about the medical exemption card you are entitled to when you have myasthenia gravis on the NHS Choices website.
• Getting free/cheaper travel: If you are no longer able to work and/or your condition is making it really difficult to get around, you can apply for a disabled persons rail card, a blue badge if you drive and, if you stay in London, a freedom pass.
• Remember myasthenia is only part of who you are and it doesn’t have to be all bad: When you are first diagnosed it can feel like your life is dominated by your condition due to never ending hospital appointments and doctors visit. It will calm down and your life may well get back to near enough normal. In those early days, it’s important to try to find the positive changes of your journey. Although it doesn’t always feel this way, it could be a lot worse.

That’s all I can think of for now, so please get in touch if there’s anything I’ve missed.

222/365 – Creating art with myasthenia: Chinwe Chukwuogo-Roy

Having a rare condition has meant I am always on the lookout for MG role models who manage to fulfil their potential and don’t let their condition hold them back. Particularly, due to my own situation, I’m always looking for those who have had the illness throughout their life rather than being diagnosed with it in later life. This weekend I’ve learned about Chinwe Chukwuogo-Roy – a Nigerian artist who battled MG from her teens and went on to be awarded an MBE for her art. 

Chinwe was born in 1952 and moved to the UK in 1975 to study at the Hornsey college of art and after graduating set up a graphic design business. Alongside the business, she continued to paint, make prints and sculpt. In 2002, she won international recognition for her portraits of Queen Elizabeth II and in 2009 was awarded an MBE. More information about her life and art is available here. 

Like all of us, Chinwe was so much more than just her myasthenia and looking at her art in the online gallery is inspiring no matter how interested in art you are. While I couldn’t see much written about her myasthenia, in the Guardian obituary it said she suffered from MG her whole life but it didn’t stop her creating beautiful art and being able to travel extensively. 

At Life with Art, an exhibition of entries to an art competition run by Myaware in 2013, Chinwe’s work is highlighted. The exhibition has been on tour around the UK – contact Myaware for more information.  

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. 

85/365 – Evaluating the success of 365 days of myasthenia

I was on a course yesterday (at the very cool Department for International Development office on Whitehall where I’m picture above) about evaluation when it comes to communications. It provided structures for making sure you build evaluation into your communication plan from the beginning and then covered the process all the way through to the reporting stage. While considering this for my work, it also made me think what I’d like success to look like for this blog. I realised I had no idea. 

Working with the IDIA (identify, develop, implement and analyse and report) structure, I decided to put down the ideas I had when starting the blog about what I wanted to achieve with it. 

1. Raise awareness about myasthenia gravis.
2. Improve understanding of what it is like to live with a rare condition.
3. Promote the good work of Myaware  (and other charities around the world) are doing.
4. Provide support for people who have recently been diagnosed or are struggling to cope with their MG.
5. Encourage other people with MG to take on the idea of doing #100daysofmyasthenia.

While these goals sound good, one of the first things we learned was to make targets SMART (specific, measurable, achievable, realistic and time bound). As you can see, my aims are vague – without any clear markers of success it’s hard to know whether I am achieving these goals.

So here they are re-written:

Within the 365 days:

1. Raise awareness about myasthenia gravis by reaching 2,000 people who hadn’t heard about MG before. Of those people, 25% of them will feel comfortable talking to people about MG, particularly medical professionals they know, and take a pledge to do so.

2. Harder to make this one quantifiable – 25% of readers would be able to name 3 things that are difficult for those who live with MG. 

3. Depending on whether the Myaware website can record where traffic comes from, I will direct at least 200 people to their website and 30 new people will engage with the charity, via support or fundraising events and/or social media. 

4. Provide support for 12 different people who need it via comments/email and if they are London-based offer to meet face-to-face for a coffee. 

5. Get 5 people committed to do #100daysofmyasthenia and 5 people committed to do #50shadesofmyasthenia (for 50 days) on Facebook, Twitter or Instagram to raise awareness in 2016. 

Alongside this, I will also be looking at the statistics to gauge what content is popular, where my main readership is and how traffic is being directed to my website. Yesterday I had a quick check and was delighted to see that although only 7 people reached my website via search engines in January, more than 70 had in March – a 10% increase. 

To get some results for the points above, I’ll set up a survey to run on the website and then I’ll be able to report how I’m doing with this along the way.

55/365- Happy Rare Disease day

The day has come – Friday the 28th is international Rare Disease day and people all over the world are meeting to discuss, fundraise and raise awareness about conditions like myasthenia gravis.

Today, it’s going to be difficult for me to engage in any of the events as I’m going to be working from home and then flying to Copenhagen for my birthday weekend. However, I’ll be looking for ways to raise awareness online. I also shared my story on the Rare Disease homepage, which you can do to. I’m just waiting to see if it gets approved.

I’ve tried to do my bit through this blog and also by sending a couple of stories to national and local press about people living with myasthenia gravis. Sadly, there has been no pick up so far but I’m hoping we will still be able to get the stories printed without the rare disease angle. These women are not only inspirational but their stories would raise awareness about the younger generation of people with myasthenia gravis. They have also been very brave in sharing their stories with me and I want to do them justice by getting them printed.

Lessons learned

I’ve learned a few valuable lessons about the way to approach getting media coverage in future.

Time: Although I am a qualified journalist, I forgot the amount of time required to get stories into the press. I also didn’t give myself enough time to chase them up properly, which is what I often needed as a reporter to get a story in print. 

Content: I wrote the women’s stories as articles rather than press releases because that’s what I’m familiar with. However, I forgot what it’s like to work in a manic newsroom – press releases are easy to deal with as you are used to turning them into stories. Pre-written articles are no doubt more problematic. I thought I was making it easier but in fact I’ve probably just confused them.

Support: As my new job is ramping up, I was very short on time to write and send the stories out to the media. This is when I should have asked for support from Myaware. Instead, I’ve asked for it too late. I’m hoping I’ll be able to get the staff there to help turn these stories into press releases and get them some well deserved coverage. 

Anyway, they are all valuable lessons to learn and hopefully it’ll be easier to get press coverage in future. 

Happy Rare Disease day everybody – let me know in the comments if you are celebrating!