Mark Alcock |  Student Reflection

P shared a tale of woe that began towards the end of 2017 and continues to this day. A personal-life tragedy set off a medical odyssey that began with ulcers and later traversed numerous other issues over time; rashes, oral thrush, sepsis, malnutrition, dehydration, joint aches and kidney issues.

In search of a diagnosis, P has been to multiple hospitals within the region and afar; to Brisbane, Sydney, Melbourne and back again. He awaits further investigations to come closer to the answer. The current working diagnosis is an auto-immune disorder; Behçet's Disease, a condition he tells me was discovered along the old Silk Road. My artwork looks at a physical manifestation of the condition (as ulcerated tissue) and works it into a landscape reflecting both the idea of the Silk Road and the patient’s tour of the Australian East Coast undertaken in search of medical help.

Patient Story  |  'Marco Polo'

My life has been a ‘treadmill of misery’ with an autoimmune disorder. I woke up on Christmas Day with a mouth ulcer which multiplied. 

Historically, Behçet's Disease is derived from a Turkish name. It mainly affects men. I get ulcers in my throat and lips. They are very painful and can appear overnight. If severe, I am kept awake drooling through the night.  My immune system is shot and my skin is paper-thin from prolonged steroid use. I have had 50 hospital admissions in the last 3-4 years.  My last admission was for sepsis and I have had multiple pneumonias. It’s only cleared up once since it all happened. 

I was a fitter and turner by profession. Before, I did lots of outdoor activities like swimming and surfing. I enjoyed a healthy lifestyle previously.  It has turned my life on its head. It’s hard on the kids and had a big impact on my relationship. At times, I felt disempowered and have felt institutionalised. It’s a painful mystery.

Advice to others: “You absolutely must have an advocate in health situations and double-check diagnoses, medications and decisions, etc.  You have to work for it.”

Behcet's Disease:

Behçet's disease is a rare autoimmune condition that can manifest with oral and genital sores, inflamed eyes and rashes. The cause of this condition remains unknown. It is a clinical diagnosis with no diagnostic test available. Treatment usually involves immunosuppression which is accompanied with its own risks.