A mini guide to Disabled Holidays in Spain

Viva Espana!

For well over 30 years, Spain has been the destination of choice for thousands of Brits. With over 250 days of guaranteed sunshine each year, Spain has been the automatic choice for holidaymakers for generations.  Could it tick all the boxes and provide something different for those seeking disabled holidays in Spain? My name is Joe Evans and I am the Client Relationship Manager at Disability Holidays guide and I am going to take a look at Spain and help you plan your disabled holiday  from your front door to your destination and back again, looking at Travel Insurance through to some excellent activities, the only thing I cannot organise is your flight although some of our accommodation includes these.

Organising Disability Travel Insurance

Before taking any holiday abroad Travel Insurance must be purchased for peace of mind should things not go according to plan.  Here at Disability Holidays Guide, we understand that when it comes to Disability Travel Insurance 'one size doesn't fit all' so we've teamed up with specialist travel insurer, Freedom Insurance, to offer a customer focused service that caters to the individual needs of our visitors.



From your home to destination.

Finding transport from home to the airport and then from the airport to your destination can be a troublesome task to organise for those with a disability but fear not, Holiday Taxis will do their utmost to cater for any special requirements you may have and offer accessible taxis in many destinations which are suitable for those using a wheelchair.




Finding Accessible Accommodation

Accessible Accommodation can be a challenge to find but here at Disability Holidays Guide we have made it simple.  Here I am going to give you a taster of five varying types of accommodation in sunny Spain we have to offer on the guide but to view our full selection please give us a visit!

 Assisted Holidays in the Costa del Sol offer fully inclusive supported holidays for the elderly and people with special needs.  Karen & Phil will be  available to see to your every need.  They are only approx 45 minutes from Malaga airport.  Their fully inclusive packages include flights, airport support, transfers, accommodation, all meals & drinks, full support 24/7, entertainment, days out, full range of hygiene products and much much more.

Las Golondrias Holiday Centre is unique in that they offer B&B, Self-Catering or half-board, wheelchair accessible accommodation over three houses.  Pat, who is a fully qualified nurse (RGN) has many years experience in the care of the elderly and she is now offering respite care to enable the family carer to take that well earned break.  If you would like to go off for the day, we can care for your disabled or elderly family member so that they too can enjoy a break from the usual routine.

Montana Sol offer a holiday complex that has been specially adapted for their disabled and elderly guests or anyone with mobility difficulties.  They offer a choice of full board or self-catering holidays in one of the most beautiful parts of the Costa del Sol.  This self-catering private wheelchair friendly villa has en-suite wet rooms in all their bedrooms offering excellent facilities throughout.

Las Piedras Hotel is a fully accessible, wheelchair friendly family-run hotel who specialise in providing holidays for disabled people.  Situated in a beautiful rural location of the Costa del Sol, they offer B&B or full board packages. The grounds surrounding the hotel are also wheelchair friendly.  They have their own accessible transport and can provide airport transfers.

Denai Villa in Costa Blanca has been designed and developed by a person with Tetraplegia, who is therefore fully aware of the need for quality accessible holiday accommodation with a high level of equipment provision.  This villa really is a must see so check out the  video of the villa for a full overlook!




Mobility & Equipment Hire

Mobility Hire Mallorca - Lowerhire have been providing first class service to holiday makers needing mobility equipment whilst on holiday for over 15 years.  They can provide you with everything from mobility scooters to commodes they really do have everything to make your stay in Spain like home from home!





Tailored Activities available

Fundacion Handisport situated in Costa Blanca, were awarded the 2011 Best Adventure & Tourism Product and they have so much on offer for everyone.  From Golfing to Horse Riding, Water Skiing to Sailing everyone gets to experience something exciting.  Have a look at everything they have to offer and book early to avoid disappointment.




Foods & Wines
Spanish food is all about variety and adventure and the farther into Spain you travel, the more adventurous the food.  You can play it safe with traditional Paella and tapas dishes or you can throw caution to the wind and dine in style in one of Spain’s many Michelin star-rated restaurants.  Just about every street will house a Spanish Café or Restaurant to suit all.  But all well planned disabled holidays in Spain must include a trip to one of Spain’s many wineries.  Due to their remote locations and age, some wineries are not accessible to wheelchair users but some like the Bodega Vina Real in La Guardia and the Bodegas Darien, which is located on route to Zaragoza are.  These are 21st Century state of the art buildings complete with accessible restaurants and bars, perfect!

If you contact any of the above please could you mention Disability Holidays Guide Thank you very much.

So there you go, Joe’s mini guide to disabled holidays in Spain.  It just gives you a small idea of what is really available out there with regards to disabled holidays and what they offer.   I hope you enjoyed it.  If you need any more info please do not hesitate to contact me. :0)

 

Spinal Cord Injury (SCI)

A Spinal Cord Injury (SCI) refers to an injury to the spinal cord that is caused by trauma instead of disease.  Depending on where the spinal cord and nerve roots are damaged, the symptoms vary widely, from pain to paralysis to incontinence.  Spinal cord injuries are described at various levels of ‘incomplete’ which can vary from having no effect on the patient to a ‘complete’ injury which means a total loss of function.  

Treatment of spinal cord injuries starts with restraining the spine and controlling inflammation to prevent further damage.  The actual treatment can vary widely depending on the location and extent of the injury.  In many cases, spinal cord injuries require substantial physical therapy and rehabilitation, especially if the patients injury interferes with activities of daily life.

Spinal cord injuries have many causes, but are typically associated with major trauma from motor vehicle accidents, falls, sports injuries and violence!  Research into treatments for spinal cord injuries includes controlled hypothermia and stem cells, though many treatments have not been studied thoroughly and very little new research has been implemented in standard care.

The American Spinal Injury Association (ASIA) first published an international classification of spinal cord injury in 1982, called the ‘International standards for Neurological and Functional Classification of Spinal Cord Injury.  Now in its 6th edition the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) is still widely used to document sensory and motor impairments following SCI.  It is based on neurological responses, touch and pinprick sensations tested in each dermatome, and strength of ten key muscles on each side of the body, including hip flexion (L2), shoulder shrug (C4), elbow flexion (C5), wrist extension (C6) and elbow extension (C7).  Traumatic spinal cord injury is classified into five catagories on the ASIA Impairment scale.

A indicates a ‘complete’ spinal cord injury where no motor or sensory function is preserved in the sacral segments S4-S5.
B indicates an ‘incomplete’ spinal cord injury where sensory but not motor function is preserved below the neurological level and includes the sacral segments S4-S5.  This is typically a transient phase and if the person recovers any motor function below the neurological level, that person essentially becomes a motor incomplete, ie ASIA C or D.
C indicates an ‘incomplete’ spinal cord injury where motor function is preserved below the neurological level and more than half of the key muscles below the neurological level have a muscle grade of less than 3, which indicates active movement with full range of motion against gravity.
D indicates an ‘incomplete’ spinal cord injury where motor function is preserved below the neurological level and at least half of the key muscles below the neurological level have a muscle grade of 3 or more.
E indicates ‘normal’ where motor and sensory scores are normal.  Note that it is possible to have spinal cord injury and neurological deficits with completely normal motor and sensory scores.


































A radiographic evaluation using an x-ray, MRI or CT scan can determine if there is any damage to the spinal cord and where it is located.  A neurologic evaluation incorporating sensory testing and reflex testing can help determine the motor function of a person with a SCI.

Around the world, proprietary centres offering stem cell transplants and treatment with neuroregenerative substances are fueled by glowing testimonial reports of neurological improvement.  It is also evident that when stem cells are injected in the area of damage in the spinal cord, they secrete neurotrophic factors, and these neurotrophic factors help neurons and vessels grow, thus helping repair the damage.  Independent validation of the results of these treatments is lacking.  However, in 2009 the FDA approved the country’s first human trial on embryonic stem cell transplantation into patients suffering with varying levels of traumatic spinal cord injury.  Although the clinical trial is currently only in its first phase, it is considered a giant leap into treating patients with spinal cord injury.  Specifically it is aimed at treating patients with acute spinal cord injury.

Tanya is Tetraplegic C4/5/6/7 Incomplete and this is her story.  

I was born in Newmarket in 1975. I grew up in Six Mile Bottom just outside of Newmarket but had a very close connection still as my Grandma lived there and this is how i met Joe as a child at around 7 years old.  I loved rollerskating, we went to a place called Rollerbury back then, it isn't there anymore.  When I was 8 years old we moved to Bottisham.  I used to cycle all the way to Newmarket, it was about 8 miles and then back again at the end of the day.  I was a very active child and loved the fresh air.  I used to work at Stocks Restaurant in Bottisham when I was 13 years old, this made me feel very grown up.  When I left school at the age of 16, I went to college and got my City & Guilds and NVQ in childcare and worked at All Saints Primary School.  I loved working there, I used to look after the children with special needs there so I found it very rewarding.  At  this time I was knocked off my Moped on the way home from Newmarket.  I suffered a compound fracture in my right tibular and fibular.  I was in a wheelchair for 4 months after that.  After making a full recovery from this injury I did a course in Hotelier and worked at The Cadogan Hotel in Newmarket. I led a very active life and loved going out and partying, I also worked in a bar as well so life  was pretty hectic back then but so much fun.  When I was 18 I visited my sister in New York, she was an Au Pair out there at the time, I visited some awesome places like Boston and I saw the Niagra falls while I was there but I found the pace of the USA to fast and I decided to come home, alone! At age 21 I was driving to work along the A1303 when a tractor decided to turn right without indicating and I ended up crashing into the back of him.  I suffered quite bad facial injuries resulting in plastic surgery on the right hand side and suffered Amnesia for five days.

After recovering from this second accident I decided to start travelling.  I went to Tenerife and Australia backpacking, where I got to swim with Dolphins! something I have never forgotton and hope to do again.  I visited Jamaica which of course was amazing!  Life was all going great for me for the next few years until 21 May 2001 when I was age 25 years old.

I was driving my friends home at around lunchtime from Red Lodge to Soham.  My friend asked me to stop at the shop in Soham so I pulled into the road next to the shop.  My friend went into the shop while I waited in the car.  Unfortunately, the shop didn't have what my friend needed so we drove up to the next shop, about a mile up the road.  I pulled up on the side of the road outside the shop.  After this we drove out of Soham towards the bypass.  I turned right onto the bypass and I did not see the car approaching from my right and it hit me, straight in the drivers door sending the car spiraling  I was in a Peugot GTI although after the impact you couldn't tell what car it was. I can still remember the bang to this day but from that point on I remember nothing until I woke up, although I do have some hazy memories which don't make sense.  I was driven by emergency ambulance to Addenbrookes Hospital, Cambridge.  The first thing I remember is waking up in A&E and being in horrific pain like someone scraping glass down my arms and I couldn't move. The next few days were filled with x-rays and a CT scan and lots of tests.  It was decided i needed an operation where I would have a piece of my hip bone placed in my throat to release the pressure off the discs, which they thought was what was causing the pain down my arms.  They thought my brain was confused by the accident which is why I couldn't feel my legs.  I felt at this time I would never walk again but the doctors remained optimistic.  Upon waking with stitches in my neck they informed me they had decided after opening me up it was best not to do this. I am a little unsure of the reasons behind this last minute decision. Over the next seven weeks I had various physiotherapy, occupational therapy and more tests but no one could really pinpoint what was actually wrong with me.  At this point they made the decision to transfer me to Stoke Manderville Hospital to their Spinal Unit.  At this time I still had an indwelling catheter that was fitted by Addenbrookes. It was decided almost immediately to fit me with a supra pubic catheter.  This is an insition into my stomach about 10cm below my belly button. (see photo below). This goes straight into my bladder and a bag is fitted to the pipe.  I call this my Gucci bag.  It was at this point the realisation came over me that  I could not move.  I was given a private room, until i was cleared of MRSA which is a precaution as I had been transferred from another hospital.  I had the pin prick test mentioned above, which is basically where they prick you all over asking if you can feel certain parts and if it is the same or different whilst your not looking.  I felt hopeful after this because I could feel some of it in my legs and other places.  They range this on a number scale (see chart).  At this point I was told I had 3 months to start wiggling at least or I would never walk again.  I was moved onto the ward and started my rehabilitation.  This included attending Physio everyday.  I would go for different kinds all throughout the day including the Hydro pool.  After a few weeks the times were increased until at one point it was almost 8 hours a day.  I couldn't transfer items from my left arm to my right and i couldn't hold my arms up at all, especially my left arm.  This meant I could not feed myself still.  After about 3 months of having this routine, I felt settled in and in a safety bubble because everyone around me was going through a similar thing.  Things like having our suppostries inserted at 6am every morning, imagine us all having a poo in that ward!  Somehow I kept going all this time, within this bubble I tried not to think about the future to much at this point. One major achievement of mine whilst in the unit was I played wheelchair Rugby in aid of Children in Need.  This was awesome and I really became quite good at it and it was for a great cause at the same time.  I was allowed home a few weekends to my Mums.  I went once on my birthday but it was a massive thing to do and I felt like I wanted to go back to the security of the Spinal ward.  Eventually I was diagnosed with C4/5/6 and 7 'complete'.  I left hospital and went home to my bungalow in Red Lodge, where i was cared for by an agency followed by social services.  Adjusting to all of this was incredibly hard.  I felt totally lonely and went into my own little bubble where I would pretend it wasn't happening.  I still wont have my wheelchair where I can see it at home and I wont have rails outside my home.  I had as little done to my house as possible.  I had the doorways and hallways widened and a wet room fitted, after nearly drowning in the bath.  I experienced many carers during this time, perhaps I was a little awquard at times who knows!  It was hard to have strangers using my things in my home and just being in my home.  I had always lived on my own before this.  After about a year or so of the carers coming I decided to have a friend care for me on a full time basis.  He moved in and  learnt how to care for me along with the district nurses who came in the mornings to do my bowl management and personal needs and showers.  I still had to be fed me at this time so he did that.  I refused to use the straps they supplied me with to help me eat, so I eventually learnt that if i wove the handle of the fork between my fingers i could just about get it up into my mouth.  This made it a little more lady like in my eyes and less obvious.  i still have to have my food cut up for me to this day.  Having him as my carer worked great for about two years but its hard to be with someone 24 hours a day everyday, especially under the circumstances and things became very hard for both of us and we made a mutual decision for him to move out.  Also during this time (2005) I contracted Clostridium Difficile (C dif), which I later found out was rife in Stoke Manderville during my stay there.  I was rushed into hospital, projectile vomiting.  My heart was racing in the ambulance and I felt like I was dying. I had to have a tube inserted in my nose down into my stomach for them to get three bags of dark green poison from  my stomach.  This also gave me septicemia.  I was very ill.  I came out of hospital after almost a week weighing a mere 6 stone.   In 2006 I was diagnosed 'Incomplete'. I was made up with this it was a huge step for me.

 In February 2006 I was around my friends house and Steve, who I had met previous to the accident came around to see me and see how I was doing.  I was about to leave at this time to go skiing in Sweden with the Backup Trust for the second time,so I arranged to see him when I got back.  On my return from skiing I met up with Steve again and over the next month or so we fell for one another.  Steve suggested moving in and becoming my full time carer because things had not been working out with my friend.  So this is what we did.  Little did I know at this time I had found my soul-mate.  He is the best thing that has ever happened to me.  Without him and the help of my family I really would have ended up in a residential home. He does everything  from personal care including bowl/bladder management to brushing my hair.  He dresses me, does my exercises, he takes the lids off my make-up although I have mastered putting it on myself.  He straightens my hair and paints my nails.  He does everything!  He is a true angel sent from heaven and I love him very much.  Steve doesn't see his role as my carer, he does it purely out of love for me.  I am a very lucky girl!  I was also lucky to meet Ricardo Darcia during this time and through Aspire he ran the half marathon in Bath and raised £3000 to buy me my wheelchair! Which I am forever thankful for as without his help I never could have raised enough money.  Another £250 was donated by a very special friend called Christine Chick.  Her son, Ricky Chick age 27, tragically died after trying stem cell treatment in Ecuador, please read his story on the link below.

Basically today I am left confined to a wheelchair.  I can move my right arm up to my head and my left arm level with my shoulder.  I have my supra pubic catheter (see pic on left) attached to my 'Gucci bag'. Steve changes the bag on this for me and every now and again he changes the tubing into my stomach, which hurts.  Its strange sometimes if I have a blockage in the pipe like for example i am leaning on it, I start to get this  overwhelming feeling that I need the loo!  For those of you that might be wondering, we have a great sex life, I have total feeling in that department!  I know when i need a bowl movement so Steve helps with that. This involves him inserting a suppository and then me lying on my left side and passing onto a Inco sheet and Steve then disposes of this for me and then its shower time and dressed.  I have a special Propad mattress with a plastic removable cover on, this helps to prevent me getting bed sores. My exercises help with management of all of this and keeping my metabolism at a level. I am now down to 12 tablets per day plus sometimes I need extra pain killers.  I also have a special adapted exercise bike which my family bought me so, I am going to be cycling to Brazil and back on that, well in my dreams lol.  I use free weights as well.  My aim now is to be standing at least three times a week.  I have a standing frame at home so I have started working with that now so I can learn to weight bare.  I pop back every couple of years to the unit for my 'MOT' and occasionally for my physio rehabilitation, which is a full time table and it makes me shattered to just look at it.  With Steve behind me I really feel like I can attempt everything and he really does keep me going.

My achievements since my accident

I have been skiing twice since the accident.  The first time was in 2003 organised by the Back up trust.  This was amazing.  We had a buddy to get us ready and they drove us up to the slopes and basically took care of us.  They sat me in a ski car and taught me how to control it myself and eventually go down by myself tethered!  I then went again in 2006 this time i was an expert and came back with my licence upgraded to the next slope! I could now go up in the ski lift on my own and come down un-tethered watch the video on the link below!

In 2009 I decided I was going to do a parachute jump in aid of the Spinal Injuries Association.  I did this through UK Parachuting at Sibson Airfield. They were awesome there.  I jumped with Chris who was the Chief Instructor and he had done over 2000 jumps so I knew I was in safe hands.  What a rush! It was a fantastic feeling.  They gaffer taped my legs together and as we came into land he kicked my legs up and we glided in! My Mum almost choked on her heart! I was first out and last down! See me in action on the link below!

We have been on holiday three times, Steve, me and my family.  Twice to Cyprus and once to Portugal.  We found a beautiful villa in Cyprus where we stayed both times.  It wasn't adapted but it was perfect.  It had steps but they were very wide and Steve could carry me easily up them. The pool there was awesome, something which helps me no end, and of course its a must to lay by to catch the rays!  Unfortunately, the owner decided to move back in so we are no longer able to use it.  We flew with Easy Jet and sat at the front of the aircraft.   I found the longer the flight the more unpleasant because I am used to lounging!  We hired a car and drove around the various places like Aiya Napa and Pathos.  I found Cyprus very accessible, although Aiya Napa was hard work as there are a lot of hills.  Portugal was accessible but there were quite a few high drops off the kerbs but this was four years ago now so things may well have changed now. To be honest, with Steve by my side and accessible accommodation we managed pretty well!


My hopes and ambitions.

I would like Steve and I to have a holiday this year, as it has been a few years now since we had one and Joe is hopefully going to help us find this through Disability Holidays Guide.  On their guide they have a beautiful place in Curacao in the Dutch Antilles called the Dolphin Suites where you can go and have dolphin therapy and stay in a wonderful accessible hotel now as I said above, I would love to swim with dolphins again and this would be the perfect place but the thing is I do not know if I could stand such a long haul flight as I have mentioned.  We want somewhere accessible and where I can see the culture of the country in my wheelchair.  A pool is essential not only to lie in but I love the feeling of being in water and of course this has to be easily accessible to me.  I would love to go to Jamaica again and I have heard there is an accessible island there but I don't know if I could fly for that long. We hope to get married this year so maybe we could incorporate that, we will keep you updated!
I am going to write a book on my road to recovery in the hope it will help others to adjust after leaving the spinal unit.  I would also like to write childrens books concerning medical equipment like my supra pubic catheter and bag so as to make them more aware and less scared.  Perhaps even an 'ABC' book for example A is for Accident etc.
Steve and I would like to have children.  We have suffered two miscarriages and I am currently undergoing tests to see where we can go from here with regards to me carrying a child full term.  We are also considering fostering as well, again I will keep you posted.

I love arts & crafts and love painting.  I taught myself to do this with all the time I have now and I have to say I am very proud of my achievements. (see my picture on left)! I would like to go further with this but I am unsure where at this time, you never know though!  I love making jewellery too but steve has to help me with that. I would love to learn another language and one of my next plans is to learn to drive!!



A last word from me, Tanya
With my scrapes in life it has made me appreciate how lucky we are to be here and how precious life really is.  I thank everyday that I get to spend with Steve and my family and friends.  I get annoyed with lazy people in life who lie about moaning and feeling sorry for themselves, I try my very best never to do this.  I would advise anyone in my position to never give up and always realise it could have been a lot worse.  It is not about what you cannot do it is about what you can!  We didn't choose to be this way but we are.  Its not what any of us chose but we have to get on with it and make the very best of it that we can.  If by telling my story it helps one person then I have achieved something from sharing it with you.  I really hope you enjoyed reading it and thank you for doing so.

A quick word from the blog writer, Joe
Knowing Tanya as a child and seeing her today sitting on my sofa makes me feel very humble to be honest. To look at her sitting there you would never know that she cant just get up and walk out like I can.  I've always known her circumstances but having written all this and thinking about it all I really didn't consider everything else that goes with a spinal cord injury.  Now when I think about the things I complain about, really they are totally irrelevent and a waste of life.  Tanya is so full of life and happy.  She does not dwell on her past one bit. She is a true inspiration.  She just wants to make her life better and help others.  I think bless her heart as she slides down the sofa and Steve nudges her back up for the fifth time. I admire Steve.  He is loving, caring and patient, which I would imagine he needs lots of with Tanya!  You can clearly see how devoted he is to her, it was lovely to witness and he is also a true inspiration in life and unfortunately he is a real rarity in this day and age. I would be happy with half the man he is.
I really hope you enjoyed reading Tanya's story as much as I enjoyed writing it and if you would like to comment below then please do, we would love to know your thoughts.  If you would like to be put into contact with Tanya please message me and I will arrange this for you.

Below are some useful links, some of which Tanya mentioned above and some which you may find helpful.  Please mention where you saw these links if you contact any of them. Thank you

A fantastic guide to Accessible Holidays

The Back Up Trust - Transforming lives after spinal cord injury

Aspire - supporting people with spinal injuries

Spinal Injuries Association

Apparelyzed - spinal cord injury peer support

Christopher & Dana Reeve Foundation

Spinal Injury Skiing video

Tanya's Skydive

A short article about Tanya's friend Ricky Chicks who died after receiving Stem Cell Treatment

Impossible dream - Facilitating outdoor sports for disabled

  

Living with a child with HMS

My Son Hadleigh Evans Age 7                                                                                          
Joint Hypermobility / Type 3 Ehlers Danlos Syndrome describes the joint laxity that results from connective tissue problems, which causes joints, muscles, tendons and ligaments to be laxer and more fragile than is the case for most people. With this comes vulnerability to the effects of injury as well as pain, discomfort and exhaustion. Its invisible so is often mistaken for laziness. The increased compliance (laxity) in the joints and the tendency of poor muscle strength and endurance affects a childs movement skills in numerous ways. The disorder affects 1 in 10,000 to 15,000.  More awareness and understanding is desperately needed.




Here are some  of the symptoms, you may have some or all, Hadleigh has all:

A characteristic posture in standing with knees bent backwards and a slightly protuberant abdomen.
Child may not like standing erect and always something or someone to lean on.
Chronic Fatigue.
Poor balance and agility skills - due to weakness and poor development of coordination.
Slumped sitting posture.
Fallen Arches (Flat feet).
Bruises easily.
Back and/or joint pain.
Fidgeting - usually to relieve numbness & pain.
Sit between the legs (W-sitting) or sitting propped up on one knee.
Poor endurance - tire very quickly, find school day very tiring.
Lack of strength and endurance for many childhood activities, such as climbing on the jungle gym, riding scooters, playing ball games, running and keeping up in the playground.
May have pain in the legs when walking or at night - this is usually due to the tightness in the muscles.
If the hypermobility is associated with a very cautious nature, the child will also avoid any activities that require mental or physical effort .
Although the joints are hypermobile, the child may have some quite tight muscles which are often the source of discomfort in sitting and standing.
Child may walk on the toes, and have difficulty walking with a normal heel strike.
High and Narrow Palate resulting in dental overcrowding.
Porcelain skin.

Some interesting facts about Hypermobility Syndrome/Type 3 Ehlers-Danos Syndrome
Actress Cherylee Houston has type 3 EDS and uses a wheelchair; she made history by becoming Coronation Street's first full-time disabled actress.


The condition may have contributed to the virtuoso violinist Niccolò Paganini's skill as he was able to play wider fingerings than the normal violinist


Musician Noah Baerman has been a long-time supporter of EDS research, selling his first CD, Patch Kit, to benefit the Ehlers–Danlos National Foundation.


The condition is mentioned in the song "Dorsal Horn Concerto" by the British comedy band the Amateur Transplants.


Ehlers–Danlos-like syndromes have been shown to be hereditary in Himalayan cats, some domestic shorthair cats, and in certain breeds of cattle. It is seen as a sporadic condition in domestic dogs.


My Story
After a very traumatic birth, my son Hadleigh was born on 7 January 2005 and he was perfect.  I soon settled into Motherhood and I loved it.  Hadleigh was a good baby. As time went on, other babies seemed to be sitting up at his age (around 6months), but he wasn’t. I just put it down to the fact he had a baby rocker seat and it was because I had put him in that. At around 11 months he could sit up, but only for a short amount of time, then he would just flop back.  We always made sure there were cushions behind him because there was never any warning he would just suddenly go. I can remember sitting opening christmas presents with him whilst panicking he would flop back, which of course he did.  By the time he was 15 months he still couldn’t crawl.  He used to roll around the floor to get where he wanted and then pull himself to a sitting position by an item of furniture, I trusted him a little more with holding himself up, but even at this age he occasionally fell backwards.  When he was 18 months he used to scoot along the floor on his bottom!  He got to his 2nd birthday and the Health Visitor decided we should visit the CDC (Child Development Centre).  There, after quite a lot of various appointments and tests etc they diagnosed him with Joint Hypermobility/Ehlers-Danos Syndrome.  We were advised we would need to see a Physiotherapist and an Occupational Therapist, and so over the next few months we did.  He would wake 3-4 times a week during the night screaming in agony with either leg pain, especially in his knees, or wrist pain. After using Calpol for sometime i realised this wasn't helping Hadleigh at all so i tried Nurofen Suspension and massaged the painful area until it went, I would feel him slowly relax, its like his joints were totally stiff and locked. These night aches still occur today only much less frequently.
He was still having 3 sleeps a day and sleeping through the night (other than the night ache waking). At age 2 and half, Hadleigh took his first step, it was a very wobbly one, but it was a step nonetheless!! I cried with joy of course.  From that moment on he started to take a few more, very slowly but surely. By the time he was 3 he could walk. At this point I was constantly scared because at any given moment, Hadleigh would just fall straight over.  For the next year, every time he fell over he would smash either his face or his head, his wrists were not strong enough to support the fall.  The slightest knock or nudge and he would be over.  He still had a buggy and would go onto have one to this day. I put him into swimming lessons at this age as this was very good for Hadleigh’s joints and he excelled at it!  He was down to two sleeps a day at this age.  Once he reached 4 years old, he started in Reception (full time school) I was worried about him.  Up until he started he still had one sleep during the daytime.  His teacher was amazing.  He did drop off to sleep, quite often.  She didn’t make a big issue of it, she did all she could to help him, for example he was allowed an afternoon snack to try to keep him going.  He was given inner soles for his shoes to wear all the time, this was to help him to stop locking his knees backwards.  The Occupational Therapist recommended a larger buggy, which arrived straight away, a sloping writing desk, a pencil grip and a sit and move cushion at school to help him sit up rather than leaning all over the desk, which would then in turn encourage him to not fall asleep and be able to write better, sadly these weren‘t provided.  Unfortunately, when he was 5 he moved up to Year 1 and the teacher wasn’t anywhere near as supportive of Hadleigh’s diagnosis.  She constantly complained about him falling asleep, which by this time he would suddenly just go, no warning, even if he was standing.  The desk and cushion had still not been supplied, even though I had offered to purchase them myself.  She constantly called me in and complained about his behaviour and really did not understand him at all.  Many people just saw Hadleigh as lazy, including some friends and family! This part of Hypermobility is extremely difficult for a parent to deal with, especially one on their own as i am, you end up feeling like your 'making a fuss about nothing' and if your not careful you start questioning yourself, as i did!  During all of this time we were back and forth to Physio and the CDC.  The Physio were really pleased with his progress.  The innersoles seemed to be working but he was given some Heel Blocks to go underneath the original innersoles as well.  Finally after leaving Year 1 with a report saying remarks like ‘Insolent’ and ‘Disrespectful’ Hadleigh moved up to year 2 at age 6.  Wow what a difference a teacher can make!! He is doing fantastic, good reports, excellent reading and writing and really enjoying his school day.  I put this down to the fact he started off this year with his sloping desk (1 year late!) his sit and move cushion (also 1 year late) and a fantastic fully understanding teacher! And to top it all he has only fallen asleep a handful of times, one time during African Drumming! He is also in the very early stages of Piano lessons, something which his teacher also picked up on as he is able to extend his fingers over the keys already!  He still wears his two sets of inner soles.  He gets extremely tired and is always in bed by 7pm and has at least 12 hours sleep per night and the odd night with painful aches but we have just learnt to cope with it. I was lucky enough to have help purchasing a beautiful orthopaedic mattress last year, his has helped no end.  To top it all he finally learnt to ride his bike last summer! It was a proud moment and I had another tear.  He is a wonderful lad and very grown up. Everyone he meets is taken in by his lovely nature and of course his gorgeous looks, he has also learnt that bending his fingers back wows his peers although I don’t really think it’s a good idea to be doing that!

Hypermobility on Holiday
Going on holiday was always difficult for us and in then end it was much easier to have two long weekends, one at the beginning and one at the end of summer, we found a whole week just to tiring for both Hadleigh and myself, although very daringly we are going for a whole week this year!  We enjoy holidaying in the UK, mainly at caravan sites that offer onsite entertainment.  I first took Hadleigh when he was 18months old.  He thoroughly enjoyed it! He has always been a very forward, open child and he could talk perfectly clearly just over 1 years of age.  We would go down to the Clubhouse much earlier than everyone else so we could get a place near the front with somewhere to park his buggy out of the way.  He would scoot himself along the dance floor, which was great until it got busy, at this point I had to remove him because he just got trampled on by all the other excited children.  By 7pm when all the other children of his age were starting to enjoy the entertainment, Hadleigh was ready for his buggy and often missed the lovely characters that come on and dance and sing on stage and then meet all the children.  He would sleep through the entire show! We always made sure we got a caravan near to the clubhouse to save the trek back!

We went every year after that.  Each year he would stay awake a little longer but never past 9pm which is what time he stayed awake until last year.  He adored the characters and met and hugged them all. These Caravan sites are perfect for a youngster with Joint Hypermobility or any other mobility disability because absolutely everything you need is right there.  They have an onsite mini supermarket, Hairdresser, Launderette, Restaurant, Fish and Chip shop, pub, Daytime Entertainment including arcades and games, a lovely park, bouncy castles, trampolines, mini cars and alike, swimming pools and live daytime and evening entertainment. They have different stuff on each day ranging from picnics with the characters to art making and creating. They also have sports activities like football, golf, basketball, swimming lessons and even  rock climbing, we haven’t ventured into a lot of these yet as Hadleigh isn’t ready but when he is we will be! There really is something for all the family and you can even bring your dog! There are staff around all day long so if you have any needs or requirements they go out of their way to help you with whatever it is and are always friendly and smiling and very approachable.   There is 24hr security on the whole site and if you need anything during the evening hours these guys will bring it to you!  The Caravans are like a mini home from home, they have always been very clean and well equipped.  Anything that isn’t in the caravan you just call the number and they bring it to your door.  Each caravan has steps with rails but you can request additional support.  You can also hire just about any item you can think of including a wheelchair. The ease of access around the park is fantastic.  Every building has a slope to the door for ease of access on wheels and all around the park is a 10mph speed limit.  From the moment we arrive its fun and friendly and whenever its time to leave we are always upset, even though we are completely shattered.  The parks are nearly always situated on a beach so there is an access point from the park straight onto the beach.  They are also normally never very far from the main town centre.  The site we went to last year is situated right next to the beach and a little train comes every half hour and drives you into town or there are buses as well.  In the town there are even more activities such as fair rides, huge arcades, horse and kart rides, donkey rides, circus, model village, wax works and much much more as well as lots of great seaside shops and top high street stores too! I love it and I would recommend it to any family especially those with a child with a disability, they would love it and so would you!!


Im hoping by creating this blog I can help raise more awareness of this Syndrome.  Its a little more than growing pains and laziness and it really is about time it was widely recognised. If you would like to add something then please feel free and if i can help in anyway then i will.

     Hadleigh's sit and move Cushion and Sloping writing desk

                                   Hadleighs Inner Soles and Blocks


Below are some really useful links that may well be of interest to you.  Should you contact any of the links please mention where you found them.  Thank you

One ladies story about life with EDS

A guide to Disabled Holidays

The Hypermobility Syndrome Association

Ehlers Danlos National Foundation