Sunday, January 22, 2012


I am in the process of brainstorming what needs to be included in a pamphlet for National Awareness Day for Rare diseases 29th February. My topic will of course be about my rare disorder called Orthostatic Tremor. However, i will be promoting the rare diseases day also.

Image from

This years focus is solidarity, to me this means forming a union with a common goal or interest and that goal is to spread awareness of diseases that affect many individuals (1.2 million in Australia according to Steve Waugh Foundation ) and their loved ones. In doing so we hope to find more understanding and support in our communities and beyond. Understanding will hopefully lead to equity and policy changes and above all kindness and empathy.
Education is never ceased. The medical field is forever changing with new diagnosis, new scientific evidence for this and that and new types of medications. All i simply want to do is a brief flyer that is (call it what you want) a reminder or education on the types of effects OT has on the body and mind, as well as a brief explanation of what it is. At best the medical professional might file it away and not bring it out until that day they come across, that one person, that presents with the same symptoms they remember seeing boldly in a flyer one day. Okay that is a bit romantic and wishful thinking but nothing is lost in trying.
There are so many patients that are misunderstood and misdiagnosed, left to Google their own symptoms and create all sorts of nightmares for themselves (oh wait that was me!!). With this flyer one patient may just get the right diagnosis by an informed medical professional.

So back to brainstorming. Like i said i will include a brief explanation talking about the unsteadiness upon standing, then a tremor frequency of approx 16Hz in the legs predominantly and in upper limbs. Then i will share the symptoms of tremor, muscle soreness, fatigue, dizziness, off balance, falls etc. Then i will also include how it can effect one emotionally like feelings of loss, grief, depression, isolation, anxiety. I may (?) include how we can be misunderstood like " why are you using a wheelchair when you can walk?" or "but you don't look sick". Since my flyer will be brief i will include websites that will be more informative regarding our disease but also to the rare diseases website because we are all in need of more awareness.
So i must be off to try and make this flyer (thinking i may need my hubby's art skills on the computer).

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