Category Archives: digital tools

357/365 – Timeline of myasthenia gravis

I’ve finally found time to put the finishing touches on this timeline of myasthenia.
Here it is:


The best bit is I want this to be owned by the myasthenia community so anyone with the link below can edit the spreadsheet that drives this timeline. If you do decide that you want to contribute, please be careful not to change any headings.

To edit, go to this link and you should be able to make any changes. If you want to add information you can go to insert in the toolbar. If you want to amend, please feel free to.


332/365 –  Digital emergency contact card

I wrote earlier this year about the emergency contact card that you can carry around in your purse. In it you can list the condition, the things your not to take if you are hospitalised, the medication you take and emergency contact details. I’ve just found about the digital version of this. 

Call me slow to the party but I didn’t know until yesterday that iPhones have a medical ID card that can be viewed when your phone is locked. This clever feature asks for similar things to the printed version:

  • condition(s)
  • medical notes
  • allergies and reactions
  • medications
  • emergency contact details
  • blood type 
  • weight
  • height

You can add information to your card through the Health app that is inbuilt from an iPhone 5 upwards. I’ve tried to find out whether there is an equivalent on android phones but I can’t find a definite answer. Does anybody know whether certain android phones offer the same feature?

Once you have set up the information, to test it out do the following:

  • lock your phone
  • slide it as you would to key in code
  • at the bottom left you will see ’emergency’ – click this it will give you the option to either make an emergency call or to view the medical ID at the bottom left corner of your phone

327/365 – #FacesofMyasthenia launched

As I’ve posted about twice now, a few weeks ago and advert for the talent in the tech sector got me thinking about running a #FacesofMyasthenia campaign. After the support of the MG community, we now have a video to launch:  
But to get this to reach as wide an audience as possible, and raise awareness, I need your help kind readers. 

Can you:

1. Use the hashtag #FacesofMyasthenia with each post

2. Can you share your own pic and a bit about your own MG as well as the video

3. Can you encourage friends and family to share it 

4. Can you put your location on the post and encourage anyone else to do the same

Let’s see how far we can get this. 

Here’s the link to the video or you can share the link to this post:

Thanks everyone for getting onboard with this – let’s show the world how beautiful the Faces of Myasthenia are.

318/365 -#Facesofmyasthenia

I’ve had a fantastic response from the myasthenia community about the idea for a Faces of Myasthenia campaign led by a Flipagram video and will get to work on it shortly.

A couple of things will make it even better:

1. Is there any guys with myasthenia out there who are willing to take part? I currently have  two willing men and a lot more women. 

2. It would be good to get some people from around the world as I currently have a lot of people from the UK and America.

3. This is more of a nice to have: There’s been interest in sharing the video on blogs, but I wonder if anyone has any ideas for how we get it to reach further than the myasthenia community?  

314/365 – Faces of myasthenia 

Walking through hipster haven Shoreditch recently, I spotted an advertising campaign of Tech’s top talent. The point of the campaign was not only to celebrate the individuals featured but also to show the diversity of the tech world. It reminded me of an idea I had a while ago for showing the diversity of the myasthenia community. 

My idea was simple: show the range of different people affected by MG through photos. This differs from the world map I blogged about last month as the faces should have more of an impact on people who come across it. Originally I had thought in the UK, but given the international engagement with this blog – why not do it on a worldwide scale? 
Again, originally I had thought of a calendar but it would be unlikely that anyone outside of the myasthenia world would see it. So why not create something that could be shared on the internet? It doesn’t mean you can’t do the former as well, but this has the potential to reach more people and create awareness.

My thoughts moving forward with this:

  1. Put a call out for photos of people with myasthenia – alongside the photo I think it would be good to have your first name and country you are from
  2. Ensure all images are edited to the same proportions 
  3. Create a Flipagram with all the different images (click here to see a previous example I did on Flipagram)
  4. Share it on social media and on the blog – encourage you to help get it seen as widely as possibly. I thought to help to get this shared and seen, a hashtag like #facesofmg (possibly linking in with #ihaveheardofMG) could work.

If people don’t send me their pics, I could use the #ihaveheardofmg photos as a starting point.

So, it’s over to you – what do you think? Would you be willing to take part? 

300/365 – Good days vs bad days

Following on from the post about using digital tools to tell your story of myasthenia, a colleague of mine found a tool while on a secondment and I had to try it. The tool slides from one image to another and therefore can show how things change. I thought it would be good way to show what good and bad days look like when you are affected by the ocular symptoms of myasthenia gravis.

To see the image, click on the link below:

On days when my symptoms are minimal, it is easy to pass for being condition free. On bad days, I can hardly lift my right eye. While the images at the top of my daily blogs are meant to track how different I can look from day-to-day due to the fluctuations, they don’t do it as clearly as this tool.

You can use this Juxtapose tool on the Knightlab website.