I am only one of about 200 other Aussies diagnosed with Neuro Myelitis Optica (NMO),While I may look healthy on the outside, this is not the case on the inside. Having an "invisible" disease makes it hard for others to understand how serious NMO can be.Before NMO, I was a passionate teacher and a volunteer firefighter. NMO took that away from me. Becoming an advocate for NMO, providing support to other NMO sufferers and promoting awareness is now a huge passion of mine.
NMO once thought to be MS, is now recognised as a disease of it's own. Sometimes aggressive & sudden in its onset, all the damage occurs during an attack (including paralysis or sudden blindness) and so it's vital that people are diagnosed swiftly and the medical profession recognises the importance of early medical intervention. Many sufferers live with visual and mobility problems, experiencing excruciating pain as a result of lesions/scarring that permanently damage the optic nerves and spinal cord. Muscle spasms, cramps, spasticity, speech difficulties, chronic hiccups and vomiting, limb weakness,respiratory weakness &/or failure, bowel & bladder incontinence, as well as burning and stabbing pains are all part of the NMO journey. Some may even die as a result of NMO. Immunosuppressants help to prevent attacks for some, not all and it isn't a cure!
My goals are simple.
To raise awareness of NMO and it's difference to MS.
To meet & support other people suffering from NMO all around Australia.
To raise funds for NMO research via the "Kiss Goodbye To MS" charitable campaign but all funds will go specifally toward NMO research.
What am I doing?
I am travelling SOLO around Australia in my off rd caravan, over 4 months (challenging even without NMO!) raising awareness / fundraising whilst visiting people with NMO who have varying degrees of disability.I need to do it NOW, as the disease is so unpredictable, every hour, every day.
I am grateful to friends & family for their unwavering love & support and to the strangers I have yet to meet on my journey for "NMO. Rare With No Cure."