A Medical Puzzle

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.