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Showing posts from February, 2023

Rare Disease Day

  Rare disease day is today - February 28th all around the world, and this year the theme is to share colours & to light up for rare.  I live with the rare conditions Hyperacusis & Tinnitus, and it's coming up on 5 years now for me since onset. The people in the image above also live with the same conditions.  We are trying to Raise Awareness, and to hopefully speed up the process for us to get to our cure. We have researchers diligently working everyday trying to figure out the mechanisms behind Hyperacusis, but unfortunately they have been short on funds to get the real work done for some time now, and hopefully soon things will come to fruition in terms of a cure.  Hyperacusis Research was founded eleven years ago by Bryan Pollard (RIP), the former president, and his work and legacy continues on to this day, and the platform continues to help tremendously for Hyperacusis.  If you are unfamiliar with Hyperacusis, it is extreme sensitivity to everyday s...

Loving Support

  Ever feel like someone or many close to you are not listening to what you are saying to them?, even after relaying time after time and time again?. Could be that they are simply just set in their ways, and what you are trying to transpire is foreign to them.  When dealing with a chronic illness such as Noxacusis (Pain Hyperacusis), Hyperacusis & Tinnitus, it’s difficult for the sufferer to everyday manage. Some severe cases are stuck within a 4 wall bedroom 24/7, cannot leave and just watch the world pass by through a window.  Not to mention that Hyperacusis & Tinnitus is not even really known at all, research is not nearly as complete for a cure to surface anytime soon, so they say. Barely any of the right information is out on the condition for others who are not suffering to get educated on. Most of the information spread across the internet from Doctors & Audiologists does not apply for many cases. The infamous sound therapy promoted, is not proven to ...