Travelling with EDS

When I first booked flights to Thailand it didn’t cross my mind for a second that EDS may pop up and become a problem. I was far too busy making mental lists mostly involving ‘buy bikini, flip flops and check exchange rates.’ I am lucky enough to not have pain and daily issues to the point where I am constantly thinking about my lack of collagen woes. It wasn’t until a friend mentioned that with the travelling I was doing, a suitcase would be a nightmare due to boat rides and needing to wade to shore to get to hotels. “Get yourself a rucksack!” Oh God. The dreaded rucksack. My arch nemesis from festivals.

So I stuffed a few clothes and some shampoo into my rucksack and trotted off to Heathrow in mass excitement and far too much Thai Baht. And now, 6 flights, 2 ferries, one motorbike, about 6 taxis,approximately 20 longtail boat rides later and one military coup, me and my dodgy shoulders and hips are back and just about in one piece.

 I am a frequent flyer and sitting on planes with a bad back and jarred hip is never fun, so the 18 hour journey was a worry. The first flight I took was about six hours, from London to Oman and it was so empty I could lay down across seats and sleep. This delayed the back ache slightly, however the second flight was very busy (screaming children, arguing families) so I had to stay seated and the aches crept into my back.

Nothing was too bad for the first few days, until I moved from a town to an island and spent about two hours carrying my rucksack. Ouch. Very bad shoulder pain. I had expected it, but it still puts a downer on your mood. I also found that my right shoulder, which is the most affected part of my body, was sore when I was swimming too and clicking more than it had in ages. This prompted me to try and carry the bag on my other shoulder only, which obviously led to killer back ache on that side. Lose lose rucksack situation. As ever.

All was not lost though. Thailand is famed for massages, and I took advantage. Asian massage is not a type that I have ever heard of. Little did I know it involved being on a bed with a small lady who bends you into compromising positions and pokes you harshly in the ribs, but who cares. IT REALLY HELPED. It was brutal and I spend the last five minutes thinking ‘PLEASE LET IT END. LET ME LIVE.’ However, I fully recommend. Once I got over the shock and drank the delicious ginger tea they gave out after, I realised how much it had loosened up my hip and shoulders. My rucksack damage felt almost reversed. I would massive recommend asking for details on any massage before taking them though, as I think some massages in spas like these would be too much for hypermobile sufferers. Gentler options are Swedish and oil, whereas Thai massage is very hard and painful. You can thought, aways feed elephants to overcome your massage trauma.

 

Sleeping in hard beds in hostels and waking up feeling like you’ve spent the night on an ironing board is an almost unavoidable part of travelling. For EDS and hypermobile people, it can mean waking up either too stiff to run away from beetles and mosquitos, or actually feel pretty good. I didn’t mind the hard Thai mattresses at all. I still clicked like a frail old lady in the morning but my back felt well supported.

Aches, pains and clicks were fully expected on my travels. I was quite worried for a time about how I would cope given a recent hip sublaxation and constant battle with my shoulders, but it can be done. Investing in a good bag, packing lightly, exercising and not doing elaborate dives from boats or cartwheels on the beach are all helpful. Also keeping deepheat at close proximity when bag carrying is a good idea (though not in the sun, the heat alone without adding to it is almost too much to handle.) I guess it helps a bit when you have an evening off due to martial law taking over town and being curfewed by the army. Lots of bored laying around in a hotel. Also take taxis, don’t scrimp and carry stuff around, they are so cheap, even if it’s a couple of street or from a train stop to a hotel. YOU CAN TRAVEL WITH EDS. You can carry a rucksack. You can clamber on and off of quaint wooden boats and enjoy glorious views like this. You just have to take it slow.

 

The newest charity for Ehlers-Danlos Syndrome

Annabelle Griffin is a bright and happy five year old. She likes playing, and music and being a princess. Unlike most five year olds however, she is the driving force behind a newly registered UK charity. Annabelle, or AJ is she as affectionately known, has vascular Ehlers-Danlos syndrome. VEDS is the most serious branch of Ehlers-Danlos, a syndrome that is not widely known of, especially, and worryingly, among the medical community.

AJ is at constant risk of a rupture of one of her internal organs due to a lack of collagen in her body, which could prove fatal. It can happen at any time, with no prior warning for her family. She was diagnosed aged 3. A detailed post on AJ’s condition and VEDS can be read here: http://bend-trend-hms.blogspot.co.uk/2014/02/rare-disease-day-annabelles-story-life.html

It is living with this constant fear and dealing with EDS on a daily basis that led AJ’s family to start a charity- Annabelle’s Challenge. May is Ehlers-Danlos awareness month, and it has seen Annabelle’s Challenge become a registered and official charity in the UK.

Parents Sarah and Jared along with lots of support in their home town, Bury, have already put on countless fundraising events and built up a strong presence on Twitter. Trustees behind the new charity are now calling on local people in Bury and beyond to come forward to help with fundraising and share their skills to help expand their work. Jared says: “As a small charity the trustees will need volunteers to help with fundraising and awareness campaigning and we are very grateful to everyone in the local community who have supported us so far helping us to raise £15,600 over the past year.

It is commonly said among the EDS community that the syndrome, which consists of different types, is not rare, just rarely diagnosed. EDS awareness month has seen a rise in blog posts and online discussion, with people across the globe helping to spread information.

Ehlers-Danlos has a long list of symptoms and complications, and can make life seriously challenging. Jared added: “The worst part of the condition is not knowing when a significant medical event could take place, she could simply be sat watching TV and without warning have a spontaneous rupture of her internal organs which could kill her.”

Earlier this year Annabelle suffered from an accident at home, a trauma injury to her nose required an emergency visit to A&E and a subsequent operation requiring plastic surgery under general anaesthetic. Jared says: “It was a very tense and emotional time for us as we were unsure how the operation would go because her skin is so fragile, the medical team had knowledge of Ehlers-Danlos Syndrome but not Vascular type. Unfortunately not many medical professionals are aware of VEDS – and this prompted our decision to register Annabelle’s Challenge as a charity.”

Annabelle’s Challenge will work with the EDS Diagnostic Service based in London and Sheffield to help provide support to newly diagnosed patients. It will also be raising funds to further the education of VEDS within the medical profession and general public.

You can keep up to date and read lots more about VEDS and AJ’s story here: http://www.annabelleschallenge.org/

EDS awareness month is continuing and by spreading information it can be hoped that people who either are affected directly or indirectly can gain more understanding of this complex condition.

The Ehlers-Danlos syndrome Association website has lots of useful information and links: https://www.ehlers-danlos.org/