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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2014 is the year for EDUCATION!

Monday 7th April 2014

I got home from a rainy but beautiful Cardiff last night after a great meeting – our biggest one yet!  Every meeting has been such a success though and it is so lovely putting faces to names after so long speaking to people on the phone and sending emails.  I am in the office for one day only today before setting off for the road again.  So much to do and get through, cannot believe its April – only a few weeks till May awareness month – ahhhhhhh!!

Tuesday 8th – Wednesday 9th April 2014

Today I left the house at 5am bleary eyed en route to Birmingham for the Paediatrics and Child Health conference.  I wasn’t really sure what to expect as it was our first time here but it was so useful.  So many doctors were interested and took our details, we also sold lots of management books!  They were so interested and thirsty for as much information as possible – and what is fantastic is how many of them understood the multi-systemic nature of the condition, and how it so often means that children are not just a bit bendy!  Really positive and worthwhile few days.  Our chair Janine is taking over tomorrow and tonight I set off for Manchester to set up for the next conference!


Thursday 10th – Saturday 12th April 2014

A new day, a new city, a new conference.  I am at the British Dental Conference in Manchester and it is another first for us appearing here.  I was not sure what to expect but the feedback and interest has been outstanding.  What was so lovely was for someone to come up and say, ah so you are EDS UK, you have been doing wonderful things to raise the profile of this condition.  Good to hear.  Many dentists and nurses came over and I had gone through a whole box of bags by day one!  So many questions and so much interest, it really is inspiring how many people are keen to help our condition.  What was even better was that I was stationed right next to the Training Theatre, a constant flow of eager students who will be the dentists of tomorrow, and one things for sure – they know what EDS is now.


Sunday 13th April 2014

I will drive from Manchester to Leicester for our local meet up, and then will be very excited to be heading home.  It is getting tiring working seven days a week, but I know how much good is being done and it is all worth it.  I am really looking forward to meeting Sandra in Leicester and I hope many of you can make the meeting so I can meet you as well.  Have a great weekend everyone.




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The EDS UK road trip begins!

Monday 31st March 2014

Today is the first day of our local area meetings in Bournemouth.  Before I left I worked in the office until 3pm as we have so much to organise and plan for our upcoming events and campaigns. We all had a good old scream today with how much we have to sort out in such a short time – but it will get done! 

I left the office and was lucky traffic was on my side and just over 2 hours later I was in Bournemouth.  It was great to meet Rebekkah and about 6 people came to the first meeting.  Most had never met someone with EDS before and they found it really beneficial, and they can’t wait to the next one!  Make sure you get down to your local meeting if you can – and if you are unable to attend, get in touch with your coordinator so they can come and see you.

Tuesday 1st April 2014

I spent today working from bed.  My body gave in to EDS and when I got home at gone midnight last night I had a really bad PoTS attack, so today I am recovering as the rest of the week involves lots more driving and travelling. I still have my laptop and phone close by and the emails keep pouring in – but at least I am horizontal.

Wednesday 2nd April 2014

Full office of staff and volunteers today and lots to do.  I am at two conferences next week and had to arrange our stand material and making sure we had all the furniture we need and couriers arranged.  Before that I have three local meetings to attend – so lots to get sorted today before I leave for the road.  Our events in May are almost ready to go on sale and our residential conference tickets will go on sale this week – all exciting stuff!  Make sure you check out our website for all the details.

Thursday 3rd April 2014

Today I head out on the road en route to Plymouth for our second local meet up.  It was quite a long drive in the haze and smog.  I have really felt the pollution levels on my lungs as I suffer so much from pneumonia, so I have made sure to keep the windows up and to limit activity.  I hope all of you haven’t suffered too much! 

It was great to meet people in Plymouth with our coordinator Marie, a few families and individuals attended who remarked how beneficial it had been to talk to others with the condition and were delighted they had attended.

Friday 4th April 2014

Today I am en route to Bristol to meet our coordinator Tashi, and then tomorrow Cardiff with Ann our coordinator, for two more local meetings.  I am really excited to meet everyone, and hope lots of you attend.  I am driving home late Saturday after the meeting in Cardiff and am looking forward to a day of rest on Sunday.  Hopefully the smog will have cleared so I can take Ripley, my dog for a walk.  Have a great weekend everyone 🙂


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Oh, Vienna!

Monday 24th – Thursday 27th March 2014

This week I have spent in Vienna at the DIA conference.  I was very luck to be awarded a full scholarship to attend so all the flights, accommodation and delegate rate was covered by Eurodis.  It was an excellent programme and we were given the opportunity to put a large poster up and many people stopped to read it and ask some questions.  There were some excellent talks and I met some really great people that will help us as a charity.  It was a shame to be on my own on my birthday on Tuesday, but I am making the most of it the weekend when I am home.



Friday 28th March 2014

I landed late last night, but I was at my desk bleary eyed by 8.30am.  There is so much to do the next few weeks, we are a bit delayed with Fragile Links but it should be leaving our office the week of 14th April, it will be worth the wait 🙂

We are almost finished with our May awareness plans, and our Area Coordinators tour is starting on Monday!  I can’t wait to meet everyone in Bournemouth, Plymouth, Bristol and Cardiff next week, I hope you can all make it.

Have a great weekend everyone, I shall be celebrating my birthday belatedly!!

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