The Journey....

I decided to create this page in order for people to understand my journey living with an incredibly unusual body. To date I've had 30 operations, on different limbs & organs, yet it hasn't affected the way in which I live my life. Hopefully I will be able to give hope to people living with osteoarthritis and auto-immune disease, two conditions that I've had to battle on a daily basis as I've got older. I'm not an extraordinary person, just someone who wants to share their story & show that there is medical help out there, you just have to push for it. 

Malar Rash

Auto-Immune Research

Around 2005, unusual symptoms began to manifest themselves in the form of swollen joints, cysts and skin problems. The image here shows my face with what is known as a malar rash, often called 'butterfly', a condition common in people with lupus. Starting as a prickling sensation, it quickly spreads until the face has the appearance of being badly burned. Thankfully, for me, these episodes are very few and far between.

At the on-set of my first rash, my doctor arranged tests, listing all of my previous symptoms and referring me to a specialist. The results showed that I have Sero-Negative Mixed Connective Tissue Disease. There is no cure and it's something that you get used to living with, although it's hard to find one drug that relieves all of the pain. For the malar rash, only steroids will clear it. It is an unpredictable condition & you never quite know what to expect. 

Unusual Findings

After four years of the Harrington Rod insertion to my spine, the metalwork snapped & needed to be removed. It had partially done its work, slightly improving the curvature, but more steel could not be inserted without damaging the original fusion site. I was left feeling fit and healthy, although a scan had revealed another anomily. My left kidney was pelvic, which meant that it was at the front of my body instead of at the back and was attached by only a thin pendulum of tissue. It was considered a birth defect & left alone. 

In the interim years, I began to experience joint dislocations, firstly in my fingers & then later in my left shoulder and right knee. I recall my knee popping out so frequently that it became a running joke at work that 'bendy bones' was off to hospital again. Finally I underwent an operation to stabilise the patella. Not long afterwards I was in hospital again, having small benign tumours removed from my hands and wrists. However, a full recovery meant that life resumed as normal.  

Lateral Dislocation of the Knee-cap

Harrington Rods

Second-Stage Correction

In November 1980, I was admitted to the Robert Jones & Agnes Hunt Orthopaedic Hospital in Gobowen, Shropshire. With the Boston Brace failing to correct the scoliosis in my spine, it was decided that the best way forward was major surgery to insert a Harrington Rod, which would bring my vertebrae into line. It was to sit from my lower neck to L3 and was, at the time, a new and groundbreaking operation. Afterwards, I spent a month lying flat and a further nine months in a full body plaster cast, which was extremely limiting but completely necessary. 

The surgery wasn't without its complications, however, and despite staples creating a neat scar, the surgeon had taken bone from my hip to help fuse the site. Having used stitches in this area, they were not all removed correctly and months of painful infection followed, with my skin having to be burned daily with a mercury stick. Despite the pain, the insertion of the rod was a great success and within twelve months I was fighting fit. Sadly, the pins broke five years later and had to be removed, although I was relatively pain free and no further surgery was advised. 

Dealing With Scoliosis

It was January 1978. I remember leaning over the back of a chair in a skinny-rib jumper and my grandmother pointing out to my mother that one side of my back looked strange. Several x-rays and hospital appointments later and I was referred to see Shropshire's top orthopaedic consultant, Dr.Rose, an elderly man with a brusque manner and no-nonsense attitude. Dr.Rose explained that I had a severe 'S' curve in my spine, caused by scoliosis. 

In those days, there were few options surgically, so it was recommended that I be fitted for a 'Boston Brace', a stiff plastic contraption that would attempt to squeeze my bent spine back into line by restricting my movement. A lot of tears were shed that year, as my mother followed instructions and tightened the brace every month, my adolescent bones rebelling under the unbearable corset-like mould. After twelve months, I was finally freed from the debilitating circumstances and expected great results but, within days of the brace being removed, my spine reverted to its old shape. That year Dr.Rose retired and my dad lit a bonfire on which we burned the Boston Brace, with promises that we would seek medical advice elsewhere. 

A typical Boston Brace