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‘Coming to their Ade’

Posted By HMSA Social Media Coordinator, April 18, 2018

Ade Board talks frankly about the effects of his wife and daughter’s EDS on him, as a husband:

I live with EDS, day in day out, year in year out. Living with a chronic illness means that I have to make sacrifices. I love travelling and exploring all sorts of interesting places and cultures, all over the world, but Ehlers-Danlos syndrome has affected my ability to do all that. It impacts every part of my life.
The thing is though, I don’t have EDS – my wife and daughter do! I have to watch the two people I love most deal with the pain, fatigue, dislocations and everything else that goes along with a chronic illness – I may not have EDS but it does affect me, every single day of every single week.

I’m not one to wallow in the hardships of life but I think it’s important that those of us living with someone with a hereditary disorder of connective tissue are recognised.

Our story:
Cathy and I met 14 years ago through a mutual friend. I knew Cathy had been ill and at the time had been diagnosed with Myalgic encephalopathy (ME). She had good days and bad days with most being somewhere in between. We did manage to do a bit of travelling together and we both fell in love with India. We found that a mix of activity and rest seemed to work best. We were using pacing techniques without realising what they were – we just knew it worked, most of the time.
Our lives ticked along very nicely and we moved in together, did some travelling and found that provided we were sensible about what Cathy could do in a day, then all was good. There were times when I had to step in completely and almost be Cathy’s carer, which was difficult on top of doing a full time job, but we got in to a pretty good routine and worked out ways of getting things done, or rather, what things didn’t need to be done!

In May 2006, Isobel (our daughter) arrived, kicking and screaming in to the world. She was clearly very cross about being removed from a warm, cosy space into the outside world. As it is with most babies, she let us know she was there. The birth was a hideous experience and one I would never want to repeat. I was so scared that I would lose both Cathy and Isobel. If you were to ask me my top 5 most awful experiences, the majority of them would be when Cathy was in labour – a marathon 5 day duration (Cathy was having strong contractions quite close together but they weren’t moving the baby down). At day 3 she was finally able to have the epidural. I will never forget sitting next to her whilst the anaesthetist tried 4 times to get the epidural in. I will spare the gory details but it was distressing to say the least.

What we didn’t know at that point was that Cathy had Ehlers-Danlos syndrome hypermobility type, not that it would have made any difference if we had known, it was just a case of persevering.
I was so angry with the anaesthetist at the time thinking he was incompetent for not being able to do it straight away. As it was, it was a testament to his expertise that he managed to do it at all. On a lighter note, I also think that expectant fathers should be offered Gas & Air at times like this. All the while the epidural was being put in, Cathy was constantly on the Gas & Air meaning that she was on another planet and blissfully unaware of what was going on. Once it was in I thought that would be the end of it. I then had to spend 36 hours with Cathy wired up to machines constantly checking her blood pressure and all sorts of other things – it beeped a lot! I was just sitting there waiting for the wrong kind of beep or someone to find something wrong on the monitors.

So Isobel finally arrived and she then proceeded to scream her way through her first 3 months. We noticed that having her legs in certain positions would cause her discomfort, but when we asked the GP he said that she’d had her hips tested and they were fine so there was nothing to worry about. As time moved on we noticed other little oddities with Izzie such as delayed sitting, crawling and walking. We spoke to the Health Visitor who said to not worry about it as she was going to be a tall girl and the extra length in the limbs, body etc meant it just took her a little longer.

The niggly bits and pieces became more and more apparent until it got to the stage where our GP must have thought we were either overly anxious parents or had Munchausen’s by proxy syndrome. We were no strangers to A&E with dislocated elbows, lumps the size of golf balls on her head from falling over and distressing tummy troubles where she was clearly in a lot of pain. Cathy and I had lots of conversations along the lines of ‘something’s not right, but we’re not sure what’

Just before Izzie started school we were noticing more and more things that weren’t quite right, She walked with an odd gait, she wasn’t able to run, became fatigued very easily and was in almost constant pain. Cathy was beginning to recognise the symptoms from her own child-hood, but, as Cathy was never diagnosed with anything other than a vague reference to ME, we had no idea what could be going on, we just knew it was the same.

Feeling the pressure:
I was getting to the point where I was beginning to worry about all sorts of things being wrong for Izzie. At the same time I was worrying about Cathy as the stress was taking its toll on her. I felt this overwhelming sense of responsibility that was not easy to deal with. Not only did I have the pressure of providing for my family financially, emotionally and physically, it felt like if I didn’t do it then everything would fall apart.

We had no idea what we were dealing with at that point and it was an incredibly difficult thing to stand by and watch and, as a Dad/husband/man, I wanted to fix everything, but I had no idea how to. I felt like I was standing in front of a runaway train, that was heading straight towards me and there was nothing I could do. Cathy was telling me that Izzie was worse than she had been at that age and I didn’t know what that meant. Was Izzie going to be worse and, if so, what did that even mean?

Seeking answers:
We got a referral to a paediatrician who I thought would be able to give us the answers but after three appointments we were none the wiser. He just said that she was hypermobile but that was all. We went home and Googled it to see what that meant and got the HMSA website. We read through and it was a revelation. It was as though someone was describing Cathy and Izzie in detail – everything seemed to fit!
The paediatrician dismissed the idea of Joint Hypermobility syndrome or any of the other HDCTs, but I wasn’t so sure and so bought the book “Hypermobility, Fibromyalgia and Chronic Pain”. After reading this, I was even more convinced and decided the only way we were going to find out if our suspicions were true was to see Prof. Rodney Grahame privately. It was a revelation talking to someone who totally understood. We came away with a diagnosis for Izzie (and confirmation for Cathy) of joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type (and he explained the grey area that exists between the two diagnoses). I’m not sure what I felt. Relief that we finally had a diagnosis, upset that the two people I loved most had this condition. Frustrated that there was no magic pill or medical intervention that could help and most of all, worried about what the future held! This was a game changer and the future suddenly looked a lot different to how it did.

The future:
Three years on and I feel much less anxious about it all. We know much more about it and – thanks to the HMSA – how to better manage it. I still fear for the future, but that’s in my nature anyway. I wish I could take away some of the pain and difficulties they have. I’d gladly take it myself. All I can do is fight their corner by going to appointments with them and research as much as I can. Plus there are many practical ways in which I can help. However I can’t take it away and I would love to dearly. For their sake and for mine. Both Cathy and I have had to rethink ours and Isobel’s future. I guess I do feel cheated in some ways but very thankful in others. I understand now that I can’t fix it, no one can and I still struggle to get my head round this sometimes.
All illness has a wide ranging impact on family members and friends and I know I’m no different to any of them, and so I’d like to say on behalf of everyone finding themselves in this position, please don’t forget us. We are part of the story of chronic illness too and it takes its toll. We stand by you and will fight your corner and be there when you need us.

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Editor’s comment:
Relationships are a vital source of support and protection against life’s stresses and strains, but chronic conditions often have a major impact. Many partners who are carers are holding families together, enabling loved ones to get the most out of life. Often, this role is a positive one, but caring can also have a big impact on relationships, careers, and ability to work, along with your own health and well-being.

Taking on the role of carer can be particularly hard when a medical condition is hereditary, because several members of the same family may be affected. Where parents are also caring for a child who has a chronic condition they may also experience feelings of powerlessness at being unable to protect them from pain or injury, and they may have to develop different expectations about their child.

The HMSA publication, ‘Living well with an HDCT’ provides the following advice:
As you and your partner try to adjust to life with a chronic condition, you may both need to reconsider your roles within your relationship and make necessary adjustments to work and social lives, and to who does what around the home, which can take some getting used to. You may find that your condition affects how you each think of yourselves and can alter how you think of each other. Some partners describe feeling helpless and scared, uncertain as to the best ways to provide help and support. Others find themselves feeling resentful or frustrated if a joint social life has ceased or they find themselves having to help more around the house after long days at work.

Intimacy is another important part of a relationship which can suffer. Sometimes a partner may simply be too tired, or are in too much pain, to be physically intimate. It is also common for the partner of a person with an HDCT to be fearful of being intimate in case they inadvertently cause discomfort or pain. Try to discuss your concerns as a couple and consider things that may help. For example, some couples find a warm bath or gentle massage beforehand helps to aid relaxation and the use of cushions and pillows may help o make intimacy more comfortable. Planning ahead for sex may seem less romantic, but it can be necessary in order to ensure that the person who has the condition has more energy and has given their pain medications time to work..

Make time to talk to each other and be as open and honest as possible. Try not to assume you know what’s going on in your partner’s head before you start a conversation, give each other a chance to explain how you feel. Some couples find they benefit from counselling, which can help them relearn how to relate to each other post diagnosis.

It is important that partners adopting a caring role look after their own needs as well that of the person who needs you:

Take time for yourself sometimes – a change of scene can work wonders, even if it only means getting out of the house for a quick walk round the block.

Try to keep up hobbies and interests as it is good for your mental and physical health

If you feel anxious, stressed or depressed, or feel you are struggling to cope, please talk to your GP. These problems are easier to manage at an early stage and options such as counselling, or extra support services, may be available.

If you help someone with mobility problems, be careful of your joints. Your GP may be able to refer you to a physiotherapist, or arrange for an occupational therapist to give you some tips, or suggest helpful adaptions.

More information on Living well with an HDCT can be found on our website or in our print. Visit: http://www.hypermobilityshop.org/epages/78166025.sf/en_GB/…

This article was originally featured in an HMSA Journal. The Journal is an HMSA members benefit sent out twice yearly. To join the HMSA visit:
http://www.hypermobilityshop.org/epages/78166025.sf/en_GB/…

The Art of Distraction – Kids and teens, by Francesca Smith

Posted By HMSA Social Media Coordinator, April 13, 2018

Sometimes, things can begin to overwhelm you and you feel that it is becoming harder to get away from pain or negative thoughts. At times like these, try to take some time out for yourself and try a few of the following. After all, it is a true skill to master the art of distraction!

Music

Music is one of the worlds greatest mood changers; find the right song and it can make you feel like your walking on sunshine. A good piece of music is a very powerful tool and shouldn’t be neglected. Turn your headphones up and get lost in a song that makes you feel strong and happy. Music can become a friend that will never leave you on your own.

Books and Films

There is very little that beats curling up on the sofa, reading a book or watching a film. Each can make you feel like you can conquer the world, be a spy, a romantic hero and transport you into a completely new world. Submerging yourself will help you to channel your emotions into the lives of the people on sceen, instead of letting them overwhelm you.

People

I understand that for many, people can be both a blessing and a curse. Sometimes, when you’re having a bad time, you will want to shut yourself off from the world and be alone. This is perfectly okay – for a time. By all means, have some time to gather your thoughts, but don’t cut yourself off from the outside world. There are wonderful people out there, just waiting to make you smile. If you haven’t found them yet, keep looking, because I promise there is a friend out there for everyone.

Schoolwork

I know this sounds like the last thing that anybody would want to do when they’re feeling low, but trust me on this one! Submerging yourself in schoolwork really can take your mind off things. Your brain can only think about so much at a time and if you fill it with maths and geography, the pain will have to be pushed to the side for a time. Oh, and you’re being productive…bonus!

This piece was written for our younger members, by one of our younger members 🙂

——————- Resources: More information for kids and teens can be found at: https://buff.ly/2GIpig4 ——————-

This article was originally featured in the Kids and Teens section of an HMSA Journal. The Journal is an HMSA member’s benefit sent out twice yearly.

To become a member visit: https://buff.ly/2GHYRan

 

Being a ‘test patient’ – Caroline Towler

Posted By HMSA Social Media Coordinator, April 6, 2018

Being a ‘test patient’ – Caroline Towler describes her experience of helping to educate medical students about EDS.

My name is Caroline Towler. I have Ehlers-Danlos syndrome classical type, and many of the other conditions that go alongside it.

Back in February, I was asked, by my cardiologist, if I would be prepared to help out as a ‘test patient’, as part of post graduate exams for junior doctors becoming registrars. I jumped at this chance, as the more doctors that get hands on experience of EDS the better for those of us who end up seeing them. I also wanted to make examiners more aware that connective tissue disorders aren’t covered enough during the training process of these young doctors, and many haven’t a clue how to deal with someone like myself.

On March the 10th 2015, I set off to my local hospital where I was met with great enthusiasm by the coordinator of the exams. He had worked hard to create a scenario that would lead candidates to my condition without revealing huge details that would make it too easy on them. I was given a brief of what I was allowed to tell them and what they could and couldn’t do to me. Then I met with the candidate’s examiner, who could tell from my very clear physical signs that I have EDS, such as extremely hypermobile joints, very thin, fragile and stretchy skin with easy bruising, and paper tissue scarring. The brief I had to give the candidates was extreme joint pain, easy dislocation of the large joints, and history of bruising, and that a genetic condition affected my parents. Nothing else was allowed in the history, but, being such a clinical text book presentation, the examiner felt it was enough for the candidates. I was extremely nervous and excited to do this.

At 9.30am I met the first doctor – he asked very clear questions and asked why I needed a wheelchair. I carefully explained that the pain was too great for me to walk any distance and I was very unstable on my joints. He examined me very carefully, not totally sure of what he was dealing with, and found my joints to be very unstable. He told the examiner he wasn’t 100 percent sure and would need further blood tests, along with MRI and CT scans, to be sure of what he was dealing with. He said that he believed it was a connective tissue disorder, but was not fully sure of which one as he had only detected a slight murmur on my heart, and that, together with my height (5ft 2), it didn’t lead him to believe it was Marfan syndrome. He felt it was more likely that I had Ehlers- Danlos syndrome. This young doctor had a great bedside manner and a caring side, which gave me huge hope for the day ahead.

The second candidate was amazing; she was so clued up on EDS that she even impressed the examiner with her knowledge on what issues it could hold for me. She even examined my mouth, which hadn’t been discussed beforehand, and I have an extremely high palate. She refused to over move my joints – after finding how flexible my hands were she turned to the examiner and said “in the interest of the patent’s welfare, I can see her joints are very unstable, so I wont check the others as I don’t wish to do harm” (woohooo – a doctor who understands that floppy joints can mean: ‘Yes, it hurts a lot and may cause damage’). This young lady was amazing in her care, her knowledge, and first and foremost she treated me like a person every step of the way. She diagnosed me with EDS and said she would arrange for occupational therapy, physiotherapy and psychology, in order to be made aware of my needs. She made me feel great and respected, and that if this is what the rest of the day held then I was in for a great day. Sadly it wasn’t.

The third candidate was sadly clueless. She picked up that I had muscle wastage and latched on it, even after a few questions by the examiners to help lead her in a better direction. She diagnosed me with muscular dystrophy and stated that I required palliative care. Her bedside manner was lovely though.
A similar thing followed with the next 2 candidates, both latching on one aspect of my body and running with that, so I was diagnosed with haemophilia, and a neurotic spastic disorder which baffled the examiners.

The sixth candidate shocked me greatly, his manner was horrendous and quite frankly brutal, and he pulled my joints while telling the examiner I was stiff, then just shoved my top up without asking or warning anyone what his intentions were. I felt completely violated and in so much pain, but thankfully he was last before lunch. If any doctor had treated me like that before I would have been outraged, but I was so shocked that someone in his position could treat someone like myself in that way, that I could barely speak. I can’t remember his diagnosis because I was in total shock, and the examiners were not happy either. They asked how I felt – I told them if I was under his care I would refuse to be treated and ask for another doctor, and they understood my feelings. I told them I would need my extra pain meds because of the abuse my joints had just had. These meds I very rarely take, so to need them should give you an understanding of the pain he had caused (safe to say this doctor failed his exam on many levels, and as it was his final attempt at passing, we are safe to know he will not get to registrar in any capacity).

Lunch was lovely, not the usual hospital fare, and chatting with other people there was fun, learning about other weird and bizarre conditions such as a type of diabetes cause by a pituitary tumour. I increased my knowledge of other people’s needs and conditions, but the best thing was that I wasn’t stuck at home with no one to talk to. I was exercising the grey matter, having a great time
and genuinely happy to be there.

The examiners checked to make sure I could continue after the last candidates attack, but I was determined to finish what I had started no matter what, because, even if these doctors failed, they would learn what EDS is, and that was what I came here to do.
The next two candidates were lovely, very carefully sensing my discomfort and trying their level best to put me first – trying to diagnose my condition, but not very sure, they said they would refer me to a rheumatologist for a full diagnosis, which made me very aware that they hadn’t done much in the field, but knew enough to pass me to someone who was more qualified to help. This really encouraged me about them – they weren’t afraid to say “I don’t know”, which I respect from doctors, as they are human after all.

The ninth candidate felt it was a good idea to shake my legs up and down and say they were nerve damaged which isn’t true, then they proceeded to do same with my arm. Suddenly POP, out comes my shoulder fully, and don’t you just love seeing that green tinge that comes to someone who wasn’t expecting a dislocated joint to be in their hands. It was my right shoulder, and this happens so often I can pop it back very quickly with no fuss. This threw the candidate, and she couldn’t finish her exam correctly. Examiners were concerned I was hurt, but I told them it was ok, I’m fine, its back and only like having a bad toothache, to play it down.

Finally the last candidate – this young lady was like the second, a pure breath of fresh air. I needed humour and good grace, and hooray, she carefully examined me, was able to clearly diagnose me, and asked what I wanted from her to make things easier for me. I wish I could have told her frankly that she needed to teach the others how to be like her.

Out of ten doctors that saw me, four passed the exam, some, with further training, will make fantastic doctors and will pass next time, but sadly it also taught me that just because you can pass medical school doesn’t make you a good doctor, and boy did my body feel that too. We were debriefed and given some Marks and Spencer vouchers for our time, and yes, I have booked myself on the next round of exams in June. Going through this process hasn’t deterred my convictions, it has strengthened them. Many of those who failed this exam will go away and research EDS and learn what we go through daily. They will pass the word to other colleagues who are studying for their exams, telling them that they came across me, and they, in turn, will do their own research, and maybe one day a trip to A and E will not involve Google by the time my children are my age.

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To find teaching hospitals or universities that require the services of volunteer patients, try entering ‘Volunteer patients for students’ into your search engine. Some examples are:

http://www.ucl.ac.uk/…/partnerships-cons…/patient-volunteers
http://www.rgu.ac.uk/…/volunte…/volunteer-patient-programme/
http://medicine.st-andrews.ac.uk/volunteer/
https://www.bradfordhospitals.nhs.uk/volunteers-needed-as-p…

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This ‘Your Say’ piece was originally featured in an HMSA Journal. The Journal is an HMSA member’s benefit sent out twice yearly. To become a member visit: http://hypermobility.org/membership/

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Image attribution: Creative Commons Attribution-Share Alike 4.0 International license – B.globa, training of friendly doctors in AMC

Adapting Activities to do with Family and Friends by HMSA’s content creator Sophie Harvey

Posted By HMSA Social Media Coordinator, November 21, 2017

Being able to do activities with my family and friends is important to me, but like most things with chronic conditions, making adaptations has been necessary. I remember thinking social things were just going to tire me out. Thinking, ‘If I can’t do it well, then I won’t do it at all.’ I ended up isolating myself from family and friends, because I thought ‘If I can’t interact with them the way I used to when I was ‘healthy’ then there is no point.’ However, now I realise the people who genuinely care about me, are the ones willing to spend time with me no matter what we’re doing. It doesn’t have to be all or nothing like I thought it was.

Through lots of trial and error, I have now found activities that allow me to spend time with family and friends, without putting me into ‘zombie mode’ for the following days. For example, we go for drives instead of whole days out. In the car we can have a chat, listen to music and explore new places together. It’s perfect for me because it’s minimal walking, and I can use my energy to engage with my family and friends while I am seated and comfortable. Also, instead of spending 3 hours at a party I only stay for 30 minutes to an hour. That way, I can still have fun and participate whilst pacing myself. In addition, rather than playing games like Trivial Pursuit or Settlers of Catan, which require a lot of mental energy, we can play luck based games like Spoons (perfect for a Spoonies!), Snap or Ludo. Adapted activities like these, still allow me to have fun with family and friends whilst pacing, and without missing out because of my symptoms.

Being open and honest about my symptoms has allowed the people close to me, to see where my limits are. They’ve learnt to be flexible. And really, my friends and family don’t mind doing these adapted activities if it means we are together, and making memories. It’s the shared experiences that count. Having something to talk about, something to connect, and say ‘Oh remember that time when…’. It doesn’t have to be all or nothing like I use to think it was. It doesn’t matter if we’re simply watching funny cat videos together. It’s still making memories, still spending time with each other, and still making a connection. That’s what really counts.

There are people out there who are willing to spend time with you no matter what adaptations you need. They are the special ones. Now, I will leave you with this Dr. Suess quote: ‘Those who mind don’t matter, and those who matter don’t mind.’

Sending you all lots of spoons!

Sophie

IS disclaimer – http://bit.ly/2vAPzbI
For more information and support, please visit hypermobility.org . If you have a story or article to share please contact kim@hypermobility.org

I Am a Zebra – Hypermobility and invisible disabilities

Posted By HMSA Social Media Coordinator, November 20, 2017

A wonderful video by Brogan Lawes

People’s exteriors can be deceptive; when you look at a person, what do you see?

Please share this video to help raise awareness.

‘I’m a media student with HSD and most symptoms of EDS. I’m currently coming to the end of a project which I hope to share to raise awareness for HSD, EDS, and invisible disabilities. The title is ‘I am a Zebra- HSD and Invisible Disabilities’ and it is a video piece with spoken word poetry, visualised with projection mapping’


Disclaimer
The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.