My name is Danny MacKeown, age 37, and I, too, am a WG patient. I live in Moe, Victoria and have worked as a butcher for the past twenty years, eleven of which have been at our local supermarket, never needing a sick day off.

Up until September 1994, I took my health for granted. I began to feel unwell, with flu-like symptoms, aching joints, fever and night sweats. I had crusting of the nose with nose bleeds and skin lesions that would not heal.

I became a regular visitor at our local doctors clinic. Test after test failed to diagnose the cause of my illness. My condition continued to deteriorate. I began coughing up blood with severe chest pain and was suffering excruciating pain in my joints, and then my legs and feet began to swell so much so that I could no longer walk.

I lost over two stone in weight and was in unbearable pain, then in January 1995, was referred to Dr Newton-John, a local specialist. Within thirty minutes with Dr Newton-John, he suspected WG and ordered a biopsy of my nose, Xrays of my chest and urine samples. I also required tests on my heart as my heartbeat was erratic.

The biopsy came back negative (low yield is mentioned by Ch'm friedlander,Ed.), the result of the Xray was that I had nodules on my lungs and my heartbeat was 120 beats per minute, with blood also in my urine.

Due to the pain I was enduring and the fact that my fingers and toes had begun to go blue, I was hospitalized on the 18th January 1995. My condition was deteriorating rapidly, with my fingers and toe becoming septic. The next few days, I was given pulse steroids (3grms Solu-medro) and developed vasculitic lesions, Although I responded to treatment, this did not stop the progression of ischaemia distally in my fingers and toes. When I was discharged from hospital 10 days later, my daily medication was 250mg of cyclophosphamide and 60mg of prednisone. I required daily visits to the doctors over the next couple of months to have my fingers and toes dressed as gangrene had set in.

Unfortunately, in March 1995, I required amputation on the fingers of my left hand to the first joint. The lesions that had appeared on my legs at the onset of WG developed into painful ulcers which after 18 months of various treatment, antibiotics etc, would not heal. I was referred to the Alfred Hospital to undergo Hypebaric Oxygen Therapy. Daily I was placed in the decompression chamber which proved to be very successful and within two weeks, to the amazement of the doctors, the ulcers healed.

Throughout this ordeal, the emotional turmoil and fear of the unknown seemed somewhat unbearable at times, but the love and support and the understanding of my wife Debbie, gave me the strength to carry on.

I have not trekked this, what seemed so lonely a road, alone. My wife and family have also. As I am sure you and those within the Support Group would know, your family and those around you suffer the anguish as well as the patient.

Now (June 96) nearly two years later, my doctors visits are monthly, my medication has been reduced to 15mg of prednisone daily with 15mg of methotrexate weekly (cyclophosphamide for the first 9 months). I have regained the weight I lost and I am improving more each day.

Recently I found our Support Group and I am also a member of the Support Group in Missouri USA. Reading the information available through the Support Groups has given myself and my family a wonderfull feeling of no longer feeling alone. Recently my family and I got together with Hayley Tulloch, an eleven year old WG whom I'm sure you are aware of Hayley's mum, Jenny, and my wife Debbie went to school together and now our son Luke and Hayley are in the same class at school. We find this quite uncanny.

(Ed note.) Danny's questionnaire records the early symptoms as:

fatigue, nose bleeds, night sweats, aching joints, weight loss, chest pain, coughing up blood, swelling of legs and feet, crusting of nose and headache. Side effects of medication include: hair loss, moon face, weight gain, loss of taste, stomach ulcer, sterile, testicular astrophy, mood swings and increased appetite.

Ah this is very familiar to many of us but quite a handful for one person and not uncommon amongst our Group members although the Danny's gangrene is a first on our records. We all wish you well,