Friday, February 28, 2014

Today is Rare Disease Day

Today is Rare Disease Day.

There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. If you or someone you know has a rare disorder, today is a great day to help create awareness.

The disorder that I want to shine a light on is : Misophonia, also known as 4-S (Select Sound Sensitivity Syndrome).
From :
The term Misophonia was developed by an American neuroscientists Pawel Jastreboff and Margaret Jastreboff, during this period Dr. Marsha Johnson (Aud) labeled this condition “Selective Sound Sensitivity Syndrome” to address the sub class of indivuals that did not hate all sound but only particular sounds. She started a Yahoo support group which has 3,500+ members, and membership continues to grow. You may find the support group here. The condition has been called many things – Soft Sound Sensitivity Syndrome, SSSS, SSS, 4S, Hyperacusis, Phonophobia, Misophonia - for those who suffer, the name is not important. Far more important is the knowledge that those who suffer are not alone – that an entire support network does exist and that research for a cure is being conducted. Here, we will use the name “misophonia” as it literally means ‘the hatred of sound’. 

Together we can help spread awareness.

No comments:

Post a Comment