Back in the UK and ready for the conference!

Have I not even been back a week yet? It feels like a month!

I had the most wonderful, much needed break and switched off for the first time in ages. I had 4 days of work whilst I was in America when I attended the EDNF 2014 Conference. It was such a successful few days. I was very honoured to have been invited to their board meeting and medical professional meeting and it was wonderful to be sharing ideas and visions on an International level.

I met with many medical professionals and heard some fantastic talks. I ran my own talk with the kids and teens again as I did last year and I screened our documentary “Issues with my Tissues” on the Friday afternoon to a packed room. It went down really well and it was great to see it again. I have so many exciting things to tell you all following my trip, lots of surprises and announcements, and as soon as I can I will share with you all! Watch this space.




We are selling tickets for our residential conference fast! If you haven’t managed to book your tickets yet we recommend that you book ASAP to avoid disappointment. We have the most incredible list of speakers, from all over the World. Make sure you are there to get the latest updates and information from all the leading specialists in EDS and more importantly to be surrounded by people just like you. Remember we also have a grant from genes for jeans that is allowing us to provide your kids and teens with an amazing few days of entertainment so you can relax and listen to the talks.

I hope you have all been enjoying the lovely weather, but keeping hydrated with salt handy at all times, this heat is no friend of POTS.

Have a great weekend everyone.

Lara Bloom
Chief Operations Officer

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When did it become July?!

I just cannot believe how time has flown. This crazy road trip and tour started in March and the EDNF conference marking the end of the journey seemed so far away. I have been to almost every corner of the country and held stands at many different conferences raising awareness to the medical professionals.

The tour doesn’t end now as there are still various areas I could not get to, or that we have not recruited for yet and for those people I will hopefully see you in September when we do our next local meetings. We will be updating the information for these regularly so keep updated with our social media and website. Please have a look at our website if one of the areas we have yet to recruit for is local to you, if you think you would be able to fulfill the role of an Area Coordinator please apply today!

I was supposed to be in Scotland this week but unfortunately I just did not feel physically able to travel, months of traveling and working evenings and weekends have finally caught up with me and I am EXHAUSTED!!

I leave on Saturday for the EDNF conference and will also be taking a holiday and will try and switch off a little bit, it has been a little too much work and no play for too long now. I am really excited to see the reaction to the documentary from the American community, hopefully they will enjoy it! I am also really privileged to have been invited to attend the EDNF board meeting and look forward to working much more closely with the charity so that we can make this an International effort in every sense to make our invisible visible.


I hope you all have a great few weeks, I shall be back in the office on July 21st and look forward to reporting back and telling you all how it went.

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Enjoy the sunshine!

Another Monday, another week.  It was so good to sleep in my bed last night for the first time in a while……Last week was jam packed and I am definitely looking forward to being in one place for a few days.

After an incredible night at the Annabelle’s Challenge Ball in Bury on Friday, I left at 7.30am on Saturday to drive to the Isle of Wight to meet my partner and we spent a wonderful few days in the sun relaxing – a much needed break!

So I am a little tired this morning but so pleased to be working from my desk instead of a Travelodge like I was last week! Lots to do this week planning the conference – we have had a few more speakers confirmed that we are squeezing into the schedule, full details will be posted next week.  We are selling tickets fast, so make sure you keep an eye on the website and social media for the announcement of new speakers and get your tickets quick!


We will be at the Hypermobility Conference this Saturday run by Dr Jane Simmonds from our medical panel and it will be great to see the message getting out to all those physios, full details can be found here.

I will be at the British Gastro Conference in Manchester next week, as well as attending the local meetings in Manchester and Leeds, so another busy one on the road, and not in my bed!  But it is all worth it and it will be great to see the research we funded with Professor Aziz presented to all the gastroenterologist that visit from all over the world.

Have a great weekend everyone – and enjoy this lovely weather – great for our bodies – not so great for the POTS though!

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EDS UK local support groups – the road trip continues!

Monday 2nd June – Friday 6th June

The local meeting road trip continues.  I had a day at home on Sunday which was nice, but not long enough!

On Monday I set off to Stoke on Trent and as always it was great to meet people. I have now driven over 8000 miles since March travelling out to meet everyone, sometimes there are as many as 25 people there, sometimes only two or three.

On Tuesday I moved onto Shrewsbury and another Travelodge.  We are really building up our friendly specialist directory from feedback from you all so thank you.  There was even a medical student at this meeting who had a friend with EDS, that is one more student that knows the reality of this multisystemic condition!

Wednesday was Sheffield and I met some familiar faces I have met before at the diagnostic clinic, and some new faces.  What is interesting is at nearly every meeting the topic of chiari and cranial instability comes up, we are trying to get a speaker to our conference as this is clearly an area everyone is crying out for more information on.

Thursday I am in York, and what a beautiful city it is. Tonight is the last local meeting this week before I set off tomorrow to speak at Annabelle Griffin’s Ball.  I am really excited to see everyone attending and celebrating with the Griffin family.


For those who have attended the meetings you would have heard me talking about my miraculous experience with high dose daily vitamin intake and how it has reduced all my chest infections and pneumonia.  I have not even had a cold now for over a year and my fatigue and pain has been reduced.  I highly recommend everyone trying it, but remember – I am not a medical professional.  This is personal experience I have after being recommended it by an immunology doctor. It is recommended that you should take medical advice before taking any medication or vitamins.

For those who wanted clarification on what I take per day it is –

2500-3000mg of Vitamin C daily

3000 units of Vitamin D daily

1000 units of B12 daily

Make sure the vitamins are as pure as possible with no additives, colouring etc.

I hope it works for you as well as it has for me.

Have a great weekend everyone 🙂

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Thank you for a fantastic EDS May Awareness Month!

Wow, where did May go?!

It’s been a wonderful EDS Awareness Month and we are so grateful to you all for everything you have done to raise the profile of EDS. There have been some fantastic events nationwide, and the Superhero run turned out to be a beautiful day and over £3000 was raised! The patient awareness day on May 16th was a great success and the medical professionals gave some great talks and spent time with queues of people answering their questions.  The videos of all the talks will be on our members only area of the site next week.


Our first black tie ball seems like ages ago already, but it was a wonderful evening and I am looking forward to speaking at Annabelle Griffin’s Ball next week. Please help us give one final push for awareness by sharing our appeal videos for Hypermobility EDS and Vascular EDS on your social networks.

The amount of fundraising events across the country, big and small, have been heartwarming.  I have also spent the month driving around attending lots of local EDS UK support meetings and it has been so wonderful to meet all the members and hear all your stories. There is still lots more driving and more meetings and conferences that I will be attending in the next few months.  We also have some vacancies still available for our local coordinators, do you think you could help us?  Have a look at the job description and areas we need help in here on our website.

I am currently typing this in Chester at one of the many Travelodges I have frequented recently!  I look forward to meeting everyone attending the meetings up North this weekend and next week.  Have a great weekend everyone – mine will be spent mainly on the motorway!!


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Wow, what a week!

We had our first ever black tie ball last Saturday at Shepperton Film Studios, and it was such a tremendous success.  We had a packed out venue, which looked amazing and the entertainment was fantastic.  We really raised the profile of our charity and awareness for EDS, people were really impressed and it was so wonderful seeing it all come to life after months of planning.

The Rat Pack legend Buddy Greco was incredible and The Lamours were amazing.  We are already planning the next one for next year!


As soon as we had settled from the excitement of the ball, we had to plan for the premiere last night.  I was so excited (and nervous) to finally see it on the big screen after three years of hard work.  We were working on it up until the last minute, I only recorded the voice overs on Tuesday morning.  It has been so exciting though, and so much fun seeing the journey come to life.  I got the finished film at 7pm on Wednesday evening, just in time for Thursday nights screening.

The cinema was packed out and we began the evening with an opening talk from Professor Grahame..  Everyone then settled back to watch the film and I was so relieved afterwards that all the comments were so enthusiastic and positive.  We are now working hard to get it on TV and hopefully we will be successful.  Once we know who are taking the film we will know when it will be on DVD, but either way everyone will get a chance to see it.


We are also working on getting the film screened at cinemas across the country in the next month – we will update you all as soon as we have the information.

Have a great weekend everyone – I am looking forward to two days of no work for the first time in months!!


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Preparing for EDS May Awareness Month

Monday 14th -17th April

The start of a fresh new week and I am happily sleeping in my own bed for a week or so. I got home last night after a week of travelling and finished off with the Leicester local meeting. It was a beautiful location on a farm and the sun was shining. As always it was great to meet all the members, and welcome some new ones as well.  I am making the most out of the next four days in the office before we break for Easter and get things finalised for next month!

We had our local meeting in Stevenage on Wednesday and it was a great turn out. The meetings are really starting to pick up and every time without fail we have fantastic feedback, if you can, really try and get to your next meeting.


Our new passports and hoodies arrived just in time for the break and I am delighted to say the tickets are finally on sale for the premier of ‘Issues with my Tissues’ documentary, tell all your friends and family and help us raise awareness of our condition. We will be travelling round the country so showing the film before it is hopefully shown on TV in the next few months. It is also a great opportunity to meet your fellow EDSers.

I hope to see you all at one of our upcoming events in May. Have a great Easter weekend break everybody.


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