For as long as I can remember I’ve been told that I’ve been very ‘unlucky’. My medical history includes numerous joint injuries, recurrent sinus infections and multiple trips into hospital for surgery.
As a teenager I suffered intermittently from joint pain when participating in contact sports at school. X-rays results were always normal (MRI scans weren’t available in those days) so the cause of the pain was a bit of a mystery. On leaving school, I embarked on a career in physiotherapy but the joint problems followed me there. During my first year in college, I suffered numerous falls as a result of joints giving way unexpectedly and on one occasion I dislocated a shoulder, badly tearing the ligaments in the process. As a result, my shoulder tended to dislocate easily and surgery was recommended. An operation called a ‘Putti-Platt’ procedure was carried out to restrict my shoulder movements and prevent future dislocation. The recovery was a long haul with many set-backs along the way but eventually the pain my shoulder settled down.
During my college days I was also involved in a road traffic accident where I was knocked off a small motorbike and catapulted over the roof of a car. Luckily, no bones were broken but I sustained knee and groin ligament damage and months of rehabilitation followed surgery. There seemed to be no end to the string of bad luck. When the time came to enter my final year of physiotherapy training, I had successfully passed all academic exams but was unable to complete the practical aspects of the course due to continuing joint pain. I was advised to take a year out from training with a view to returning once I’d regained physical fitness. That was over thirty years ago and I never did get back to finishing the course. I did however succeed in discovering the underlying cause of all the joint problems.
By the time I reached my mid-thirties I was married with two children and my medical history continued to grow. Even pregnancy had proved problematic. I suffered several miscarriages and spent three months on crutches during my last pregnancy due to lax pelvic ligaments. I also suffered recurrent sinus infections while pregnant which has left it’s legacy to this day.
When my youngest child was three years old, I was admitted to hospital for an operation to eliminate a recurrent frontal sinus infection. Unfortunately, the surgery nearly put an end to me as well. I finally left the hospital some six weeks later having experienced a very severe reaction to an antibiotic. I’d developed a condition known as pseudomembranous colitis which left me extremely ill and weak, and eventually it turned into an acute arthritis affecting each of my previously injured joints. When I was at my lowest ebb in hospital a renowned physician was consulted to sort out the problems. His expertise was exactly what was required as he succeeded where others had failed by finding the missing piece of the puzzle that was my medical history.
I was diagnosed with Ehlers-Danlos syndrome (EDS), Hypermobility Type, which is a genetic disorder that affects collagen structure and function. The abnormalities in the manufacturing of collagen within the body affect connective tissues, causing them to be abnormally weak. The symptoms of EDS include unstable, flexible joints with a painful tendency to dislocate and subluxate. This is due to ligaments which, because they are lacking proper collagen – the molecule that provides strength to ligaments – are overly stretchable. There is also a tendency to develop abnormal scar tissue following injury or surgery. The skin is another feature of EDS – it has a smooth, velvety texture and bruises easily. The severity of the condition varies from person to person and there is no known cure. Treatment is supportive.
At long last the mystery of my medical misadventures had been solved. It was a great relief to find out why I seemed to be ‘different’ to everyone else. However, I soon discovered that the condition is poorly understood and many doctors do not know how to take care of a patient with EDS. This can be very detrimental where surgery is concerned. I have continued over the years to require surgery on an on-going basis but I am always careful to ensure that the surgeon is aware of the problems associated with EDS. I’ve been very lucky to find an excellent physiotherapist who is extremely knowledgeable about EDS and she comes to my rescue when help is needed.
Regular controlled exercise is hugely important to stay on top of a condition like EDS. I have learnt techniques to improve muscle tone and avoid injuries. I cannot walk on a hard surface for any length of time without experiencing joint pain, so soft ground and good footwear are a must. One of the few benefits of EDS is that I have very clear, soft-looking skin. People often comment on how well I look which is a great bonus although it can be deceiving as well.
Those of you who have read my blog before now will know that in recent years I’ve had a serious battle on my hands with an MRSA infection and osteomyelitis following surgery for recurrent sinus problems. My life may not exactly have gone according to plan but it ain’t bad when all things are considered. My husband deserves a medal for putting up with so much over the years. He’s the real hero here.
Oh that soft, young looking skin 😉 I’m glad you got your diagnosis eventually, even if you had to be so very poorly to find out! I’ve also had shoulder surgery, though mine wasn’t successful so I’ve had more than I can remember!
I often think that for a supposedly rare condition, there are an awful lot of us with EDS, though I wonder, have you been over to Leeds to see Prof Bird for a complete diagnosis, particuarly with all the problems you’ve had with MRSA I should think it worthwhile, I’d thought I had hypermobile type until I saw Prof B and was more comprehensively assessed and turned out to have a ‘global’ EDS. He might have some advice on the MRSA/facial surgery side of things.
You lucky thing though with your hubby;) Bendy Girl x
Steph, you deserve a Hero!
You explain the difficulties in a clear and concise way without a moan or a whine.
You are my hero!
Thanks BG! No, I’ve not seen Prof B though I know of his work. You’re right – he may be able to shed more light on my overall situation but right now, I’ve no wish to add any more doctors to my list. Enough is enough!
Grannymar – you make me blush 😳 Thanks for your endearing support 😀
Woah, Steph you would make one long PBL scenario that’s for sure!
A really interesting insight into a case though, and it’s always good to hear the human side of it. Not particularly relevant but we’ve spent a lot of time being stumped by connective tissues such as collagen, so I can sort of understand how EDS can affect someone in this way.
As informative as it was to read your story, I’m hoping that marks the end of your medical problems!
Thanks Harry – if only, but there’s no harm in wishful thinking – it all helps. Life is rarely predictable, that’s for sure!
I’ve often been asked to ‘demo’ for medical students and I reckon I’ve stumped a few over the years. But then I’ve stumped a few top specialists too!
Wow, you’ve been through the mill..
have you tried MBT shoes? I wear them all the time to control my knee pain, I couldn’t live without them, and they make hard surfaces much easier to cope with. I would definitely recommend them!!!
Thanks for your recommendation. I’ve not tried MBT’s mainly because of the prohibitive cost. I always make sure to buy ECCO shoes (the ones with a receptor sole incorporated) and they seem to work well at cushioning my step – though I do find that they need replacing fairly often in order to maintain maximum bounce!
Sorry to hear about your own knee pain – your MBT’s should come in handy for all those hospital corridors!
Steph you old romantic you. How nice!
The reality is I couldn’t have got through it all without his support.
Today I’m off to the UK for a check-up with the surgeon. Fingers crossed!
[…] but as it wasn’t bothersome, I was not concerned to do anything about it. With my history of complex medical problems it didn’t quite figure as a medical priority. Anyway, when I eventually showed the lesion to […]
Yours is a remarkable story, Steph – you are to be honoured for the way in which you face your illness and for the vigour and vibrancy you display. You are an inspiration. The lessons illness teaches us are remarkable – and you are a true example of someone who has been strengthened and who has grown through adversity. And I’m delighted you’re blessed with your own hero too – nothing quite like a loving and supportive partner and a whole lotta love!
I’m blushing now AV 😳
Thanks so much – this comment means a great deal to me and I really mean that!
I agree with you totally – adversity teaches us a great deal. Loads of good things have come out of my experiences – I’ve met some fantastic people and I’ve had lots of opportunity to look at life from a different perspective. And best of all, I’ve learnt how important it is to appreciate the good things in life.
Your lovely comment makes me feel very honoured indeed 😀
The post below says a little of what I’m trying to say here
[…] Blog: A Medical Puzzle « The biopsy report […]
[…] we got the shock of our lives. As I’ve always had problems with my joints thanks to having Ehlers-Danlos syndrome (EDS), I used to helm the boat while my other half did all the hard work of keeping the boat […]
[…] been a medical puzzle myself for many years, I can assure you that it was a huge relief to finally receive a diagnosis. […]
EDS. Don’t have a case in my practice.
Always looking for it.
I’m delighted to hear that you’re on the look-out for EDS as I know that many people go undiagnosed and suffer the consequences. My GP once told me that he had only one other patient in his practice with EDS but that (unlike me), she was besotted with every symptom. I don’t give EDS that luxury, it has to earn it’s keep! 😀