In the madness of the Writer’s Challenge that I have been taken part in that I have forgotten to mention that a very special friend of mine who has her own blog is completing a special project for her blog abledis.com. Marissa, like myself suffers with chronic dizziness, and was diagnosed with a debilitating vestibular disorder and set up her website “with the intention of documenting my life living with a hidden disability”. For those who aren’t familiar with vestibular disorders, they are defined as:
“…a disturbance that causes an individual to feel unsteady, giddy, woozy, or have a sensation of movement, spinning or floating. Balance is the result of several body systems working together: the visual system (the eyes), vestibular system (the ears) and proprioception (the body’s sense of where it is in space). Degeneration of loss of function in any one of these systems can lead to balance deficits”
The project is called ’12 Months, 12 Journeys, 12 Lessons’ and where she is educating herself about a different medical condition each month. So far, Marissa has featured spinal muscular atrophy, budd-chiari syndrome and multiple sclerosis. And this month I and my condition, long-standing brain stem lesion and spastic paraparesis is being featured. The page featuring me, with a list of the posts related to my condition, can be found here:
http://abledis.com/12-12-12/rhiann-johns
As part of this incredible project, I will also be taking part in a podcast interview with Marissa which will be available to listen to near the end of the month! Each month Marissa is truly being an advocate for the project member and the condition being featured by wearing a t-shirt and a wristband to various medical appointments to show her support and raise awareness for the cause. As you know, my condition is very rare, and so were no organisations or charities that we could find to reflect my condition, so Marissa had a t-shirt made instead! And somehow, we were able to find a website that had wristbands (silver) to support various brain disorders. Here they are:
Anyway wanted to let you all know about this incredible project, and I hope you all support Marissa and all of her hard work by visiting her website and having a look around and learn all about her health condition as well as those project members being featured.
