As some of you may know I am hoping to have a career in adult nursing. I know that I will struggle, but its a career that I drastically want to at least attempt and I do have back up plans, if this career choice fails. However, I was due to start this up and coming March (2016) to do my training, but I had to have MPFL reconstruction surgery in October on my left knee (already had my right knee done in 2013), and I have and will not have enough strength or recovered in time. After sorting it out with the university, they have deferred my entry onto the programme until this September.

But basically, my question is has anybody else with the EDS HT (in particular) diagnosis, managed a career in adult nursing and how did they cope with the placements and training? And which areas are you working in?

Thank you in advance...

Kirsty :) X

12 Replies

  • Kirsty, because no-one else had replied, I thought I'd offer my two pennyworth. I'm concerned for you. Because nursing involves heavy lifting. I'm worried that not only will you be vulnerable to ligament damage at the time, but will also be laying down a future problem of ligament and joint damage, unless you can restrict your nursing to areas where there isn't heavey lifting or strenuous activity, but I don't know if they allow you to do this? I think that would be the first question to ask.

  • Sorry for the late reply. I am quite aware of what it entails, and I have been working as a HCA for the past year (struggling on some days, don't get me wrong). I already have a problem in terms of ligament and joint damage, so I am going to have to try and protect and minimise any further damage. And yes, they will hopefully be able to put me on sort of limited duties.

    Thank you for your answer X

  • I hope they can put you in a setting then where you won't do damage but can have a fulfilled career:-)))) At least the condition has been diagnosed so you are able to know what the score is. Mine wasn't diagnosed until I was 65! LOL!

  • Thank you very much Whatnext1 :) And aye, I was very lucky in terms of speediness of diagnosis. Bless you for taking so long to get diagnosed! X

  • I do admire you for wanting to do a caring role despite your eds but it maybe be difficult.A lot depends on the severity of your condition and whether you could be covered by employers liability insurance in regard to what would be the patients in your care and their safety.Have you considered being a ward physio?You would certainly be able to relate to patients with joint rehabilitation.

    Good luck in whatever you decide to try .

  • Sorry for the late reply. I have considered physiotherapy, it was what I had wanted to do since the age of 9/10, when I first started having therapy myself. But it is still one of my back up plans if nursing can't or doesn't work out for me. I love the idea of being able to relate to my patients, thats why I was hoping to work in healthcare/orthopaedics/rheumatology. I just hope that I can physically meet the role.

    Thank you for your answer X

  • Hi,

    Good your keeping options open with brilliant back up plans.

    I am sure ,given the ok,you will succeed at whatever you set your mind on.See any change in plan as a positive move towards another role and not a setback in one considered.

    Have you spoken to the healthcare occupational therapists under your local nhs council to talk through how your chosen roles would impact on you ,their guidelines 're health and safety,insurance plus what help or assistance you could get?They may have had similar questions before and be able to give you first hand the legalities and health risks of you working in nursing.

    I apologise if this is something you have already done but having had my eldest son go through a difficult out of his hands decision,career wise,I thought it best to mention all aspects.

    He was told that his very mild condition would not be a problem all throughout training workplace etc.Did really well exam,assessment etc only to be told he is unemployable in his trained role due to the million to one chance it may impact on others.Four hard years and always the ok until employment stage.He is now picking him self back up and having to train down a similar but different line.

    Please check with careers advisor and get advice in writing.

    Again good luck .Be a great achiever whichever pathway.

  • Sorry for the very late reply. I have spoken to them, but at the time I didn't actually have a diagnosis of EDS - just 'chronic joint problems'. And thats a good idea to get it in writing. Thanks X

  • Hi. I echo some of the comments of concern above. I have EDS and have had to change career three times now because of it. Initially I was a PE teacher (when younger) and wasn't bothered too much (or so I thought by hypermobility and didn't even have a diagnosis). Following a spate of injuries that I just didn't recover from that resulted in mpfl and shoulder reconstructions I was diagnosed with EDS. I was advised PE teaching was no longer a viable career. I could have taught a different subject but my anger etc at the diagnosis led me to totally retrain - as a midwife. I was off my training repeatedly because of joint issues and injuries and on qualifying I worked on delivery suite. It's a very physically demanding job (as is nursing) as you are constantly on your feet, rarely get breaks, are pushing beds and wheelchairs around etc amongst many other issues. I spent 4 months in work out of 2 years as a direct consequence of my EDS and the heavy duty nature of the job (alongside a manager who refused to make reasonable adjustments) and ultimately was dismissed on ill health grounds. I am now a health visitor which is less physically strenuous but still demanding and I've continued to have issues. I have to say with all honesty that although nursing is what you really want to do, it is very physically demanding and shift work doesn't work well with pain and fatigue and can increase it. Also, while your training you will be on the wards for a full working week (including night shifts) whilst having to complete your academic studies. Its a real struggle if you have a flare up of pain or an injury. That being said if you can make it through 3 years of training, you can then tailor your jobs to less physically demanding areas of nursing that allow you to pace - community specifically rather than ward based.x

  • Sorry for the late reply. Thats great advice, and to actually to hear from someone who works in the career (ish) which I want to do is really helpful. Thank you for everything you've said. I've definelty got a lot to think about X

  • Hi Stretchygirl

    I would have a re-think. I know how hard a decision you are facing right now at the beginning of a career that you so desperately want to follow. I was faced with the same decision in my late teens. Twenty years on, I am now in a wheelchair, in constant pain, unable to wash, DOUBLY INCONTINENT and unable to feed myself. I have 24 hour care and it is all thanks to nursing!

    Against the advice of my consultant, I went into RGN (adult nursing) at the age of 19. I had been working as a nursing auxiliary/HCA for 3 years and couldn't wait to start my training. I'd had very minor problems with my EDS-HT but tests did show significant degenerative/osteoarthritic changes had already begun in my spine without causing any pain. I ignore the consultants advice because like you I had already been in the job for three years and felt fine.

    I went on to qualify age 22 and started work on the surgical ward. I got married at 24 and had a baby soon after. At the age of 27 I started work in theatres and eventually became a senior theatre/recovery nurse. One day, age 31, I noticed pain in my heels and over the weeks it gradually got worse. It got to the point where I couldn't weight bear on them and I had to go on the sick.

    MRI and Xrays showed that my spine was like that of a ninety year old. During my career, all the lifting, bending, twisting, squatting and kneeling I'd done had caused tiny deposits of bone called osteophytes to build up on my vertebrae. The osteophtyes had built up so much that they were causing spinal stenosis and cord compression.

    10 years on, at the age of 41, I am now being nursed just as I nursed. My life has been robbed from me by this awful condition and I know that if I had chosen a less physical career, I would most likely be less disabled.

    Please think carefully. I know that you probably feel fine and that it will never happen to you. That is exactly how I thought. There are other less physical health care careers like dietetics or physicians assistant.

    It is down to you in the end but don't forget that time soon passes and most of the damage caused on a day to day basis is silent, you won't even notice the changes until one day you are in severe pain and can't move.

    Take care of yourself because when you're short staffed at work, the other nurses won't care that you have EDS. They will expect you to pull your weight and work hard, this could make the course of your disease progress 3x faster.

    All the best, whatever your decision xx

  • Hiya Damagedgoods,

    Thank you ever so much for your reply. I'm thinking really carefully as it is. And I have found out today, that the decision may simply be taken out of my hands over the next few weeks and I have got more surgery potentially coming up in the up and coming months. :( It's not where I wanted to be, but I have now got used to listening my body, through having no choice.

    I am aware of the alternatives out there, but thank you for making suggestions. I have 3 back up plans so I am prepared sort of haha!

    Thank you, and I hope that everything 'okay' or the best that it can be for you at this moment for you!xx

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