Wearing a kickarse pair of Dorothy Heels to every medical appointment for a year, to raise awareness and funding for Dysautonomia via The Greg Page Fund for Orthostatic Intolerance at The Baker IDI here in Melbourne, Australia. And hopefully bringing a little joy to world of chronic illness in the process.
A little about me:
The strange thing about illness is that it can occur at any time, and usually, when you least expect it. One day I was working as a Neuropsychologist, busily preparing for a team-meeting in my office, and the next I was being wheeled down to my hospital's ER unable to stand. That was 2006. I was 33, married to the love of my life, two great kids and a career. Not exactly prime time for serious illness to enter my life. It was also the beginning of a scary and lengthy time, of doctors, more doctors and yet more doctors, and more tests than I can count. All with no answers, and ever increasing illness. It wasn't until almost a year later that I found a doctor who could put the pieces together. And still by the end of 2007 I was sitting in a hospital coming to terms with the fact I was no longer able to work and my life had taken a very unexpected turn. Thus began my life with Dysautonomia.
Dysautonomia is an umbrella term for a range of illnesses that affect the autonomic nervous system (ANS), the body's autopilot. The ANS controls the body's unconscious processes. Everything from heart and blood pressure, to breathing, digestion, temperature regulation and even how our pupils react to light.
Currently, there is no cure and symptoms must be managed as they arise.
For me this has meant a progressive and degenerative condition. My symptoms are many, but include: fainting (syncope), inability to control my body temperature, a host of often painful and distressing gastric problems, painful small fibre neuropathy, difficulty walking and low heartrate (bradycardia) which culminated in a pacemaker this year, 2 months after I turned 40.
Each patient experiences a different collection of symptoms and level of impairment, depending on the areas of their ANS impacted and to what degree.
Some of the common types of Dysautonomia include:
Neurocardiogenic Syncope (NCS).
Orthostatic Intolerance (OI).
Orthostatic Hypotension (OH).
Postural Orthostatic Tachycardia Syndrome (POTS).
Pure Autonomic Failure (PAF)
Multiple System Atrophy (MSA)
Many patients also fail to fall into one of these subtypes and are given a diagnosis of a general dysautonomia.
These disorders are poorly understood and little known in both the medical and wider community. At The Baker IDI the Greg Page Fund for Orthostatic Intolerance, is raising funds for the research into the mechanisms of these disorders and potential treatments.
So I will be donning my Dorothy heels, made famous in this post (http://bobisdysautonomia.blogspot.com.au/2010/06/fabulous-friday-glitter-dreams-dorothy.html) on my blog, and wearing them to every medical appointment (specialist appointment, test, GP appointment, blood work, physio etc) for the next 12 months. I will documenting these adventures in photographs to be displayed on here and on the blog. And hopefully bringing a little joy, awareness and much needed research funds to the world of Dysautonomia and Orthostatic Intolerance.
So come and support me. Donate a dollar or two, to bring a bit of glittery fabulousness to the world of Dysautonomia and support the great work done by The Baker IDI. Lets find a cure!