Tag Archives: Myaware Young People’s conference 2015

312/365 – Maria and Zenaida

Of all the familiar and new faces I spent time with on Saturday at the Myaware Young People’s conference, Maria and Zenaida were the most remarkable. Why? Because they grew up in the same Portugese village, have been friends since they were small and both have myasthenia. The friendly pair openly shared their story with me.

Zenaida was diagnosed 16 years ago back in Portugal – she was told at that time she was one of 500 in the country to have MG. Maria knew of Zenaida’s condition but didn’t connect the dots when she started developing MG symptoms of her own. 

‘We all have such different symptoms – it’s a unique experience for each of us,’ she said.

It was only when she was telling her friend that the alarm bells started ringing for Zenaida – she told Maria to get herself immediately checked out by the doctor. 

I have heard this story often from people with MG – they have correctly diagnosed it in others around them. With it being a rare disease, sadly not everyone who starts having symptoms has a friend or connection that knows about myasthenia. Maria and Zenaida are the first pair of childhood friends I’ve met who both have it.

Zenaida has had three crises during her 16 years of life with MG, whereas Maria had her first terrifying experience of breathing difficulties this year. She said it truly made her understand how difficult the condition can be – she blacked out and woke up in hospital where she spent days recovering.

They have been supporting each other since they were young, but Maria never felt as lucky to have a friend who understands during those first days and weeks of recovering from crisis. 

While this story got me wondering once again about how we develop this mysterious condition, it also made me jealous of the easy understanding these girls share. Most importantly, it reinforced that the more people we can talk to about MG the better chance we have of helping others to identify it quickly.

So just in case you’re new to this blog – if someone tells you they have any of the following tell them it could be myasthenia gravis and they need to go their doctors:

  • muscle weakness
  • double vision
  • droopy eyelids
  • constant heavy limbs
  • squint eyes 
  • difficulty speaking
  • difficulty swallowing
  • their limbs give out 

 

 

311/365 -Funding research for myasthenia

So yesterday I covered the key points in the speech given by Myaware’s CEO Ruth Inglew. Today I wanted to look at the research she mentioned.

Nearly £1 million from the charity has been spent on funding research over the last nine years. While this doesn’t sound like a huge number, around £110,000 a year, it is being used to fund some interesting projects.

Read all of the blogs about the Myaware Young People’s conference 2015.

Some of the research that is being funded currently is:

  • A self assessment tool which gives you a medically accurate score to give your consultant and that you can track over time – I wrote about this research trial here when I thought I might be able to take part in it.
  • The University Hospital Southampton is looking at why it takes aziathioprine so long to work (6+ months) and if there are any early indicators to show it won’t work. 
  • Moorfields hospital in London are looking at ocular myasthenia gravis (OMG) and signs of people who are likely to develop generalised MG.
  • In Oxford, there is work being undertaken to look at existing medication to see if any could be remodelled for use on myasthenia gravis. This is what happened with salbutamol – a drug used for people with asthma which was repurposed for those with congenital myasthenia gravis. 

There is some interesting research in that list with a mix of trials for new arrivals to the myasthenia world (aziathioprine/OMG) and also for those who have been in the club for a while now (self assessment/drug remodelling).

Is there anything MG-related that you would like to see researched? 

310/365 – Myasthenia Gravis: the latest

As I mentioned in yesterday’s post about the Myaware Young People’s conference, CEO Ruth Inglew gave an update on the charity’s activities and aims over the next year. 

Some of the information I had heard before and some was new, but it was interesting to hear it all put together.  

 
An overview of myasthenia

Ruth started by reasserting that it is difficult to know exactly how many people in the UK with MG there are due to a lack of NHS and local authority data. The charity thinks there are:

  •  Between 10,000-12,000 people with a form of MG in the UK
  • 53% over 60
  • 47% under 60
  • A third have ocular myasthenia gravis
  • 600 have congenital myasthenia gravis
  • 300 have LEMS

The charity have a database of around half of the people in the UK who are affected by MG and have in the last year increased the number of new members by 721 people.

It’s incredible to think of how many people there are out there who haven’t reached out for support.

Data from the Neurological Alliance

The next section of the talk focused on data from the Neurological Alliance in 2014.

It said that:

  • 51% of people with MG saw a GP three or more times before they were referred to a neurologist
  • For 40% it took more than 6 months to be referred to a neurologist
  • More than 50% had difficulty receiving treatment or services

Even more shocking than the above is the amount of money being spent on non- elective hospital stays for myasthenia patients – a whopping £16.3 million a year in 2012/2013. 

NHS spend varies largely in the different regions. The charity has calculated that replicating the working methods of the cheapest region across the country, assuming patients in that area are receiving the best care meaning that they aren’t needing emergency hospital treatments, could save the NHS around £8 million a year. There are quite a few ifs and buts in the theory, however the regional differences do suggest there are savings to be made.
There is scheduled to be a National Institure for Health and Care Excellence (NICE) report into neurological problems from 2016, which Myaware is hoping to feed into.

Aims for the charity 

Some of the aims Ruth pointed out moving forward are:

  • Campaigning for medical exemption certificates as one third of people only find out about them through Myaware. I found out after a year and therefore was paying around £30 a month for those 12 months that I didn’t need to pay. 
  • To get accredited GP training to do with myasthenia gravis – whether that is via online training or a seminar
  • Building on this will be new information for medical professionals provided by Myaware – the charity is hoping to create postcards for members to give to medical professionals when being seen by them

More from this talk on research in my next blog.

309/365 – Myasthenia community coming together

Yesterday was this year Myaware’s Young Person’s conference in Birmingham. Kicking off at 11am, the schedule was quite busy until after 5pm.

Sadly I missed the morning activity as we got delayed coming through from London but from what I heard the presentation by Dr Fiona Norwood, of King’s College Hospital, was both interesting and made lots of the members want to transfer over to her. From the brief conversation I had with her over lunch I can well imagine how great she would be as a consultant. More about this in my next blog.

The afternoon schedule was good – with a mix of workshops, an update about the charity from Ruth (another blog on this will follow) and finally a session of Tai Chi and relaxation (as pictured below) which was definitely my highlight of the activities. Everyone who was there will long remember flying like majestic birds. 

 
For me though what made the day was the conversations with my fellow MGers from across England and Northern Ireland. There was a really positive atmosphere in the room and everyone seemed delighted to be in a place where they didn’t need to explain themselves. 

While there was a sense of support amongst the group and being there for anyone who was having a hard time, there was also lots of laugh. While some of the sessioms organised were quite serious, the company was relaxed and everyone seemed to be having fun when chatting with each other.

As I’ve said above, I have plenty more to say in the next few posts. For now though, thank you to everyone who made my trip through to Birmingham (on the slowest train on earth) worthwhile. I’ll definitely be staying over next year!

308/365 – The eve of Myaware Young People’s conference

I wasn’t sure if I was going to make the Myaware conference for under 40s tomorrow. First of all, my weekends have been so manic over the last while that I didn’t know if I could deal with another Saturday night away from home. However, when the posts about it started on the Facebook group a while back, and the excellent line up was revealed, I suffered FOMO (fear of missing out). So I compromised and decided to go through to Birmingham on Saturday morning and come back the same night. 
I didn’t expect Elaine to want to come – a whole day is a big ask and, with her full on job, her weekends are precious. However, when she said she wanted to join me I was delighted. Our plan until today was to drive through together in her car. But then her indicators stopped working.

Swithering about whether to go or not following this latest set back, I once again looked at the line up and decided I would be mad to miss it. So Elaine and I will be getting up much earlier than we normally do on a Saturday morning (especially since I’ve been out at a Grease singalong tonight as pictured above) to ensure we’re there for kick off. I’ll be tweeting from the conference at @LaurnaRobertson and will post about it after the event. 

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