Episode 136: When It Hurts to Hear — Hyperacusis Awareness Founder Jemma-Tiffany

Episode 136: When It Hurts to Hear — Hyperacusis Awareness Founder Jemma-Tiffany

Overview

* * * TW/CW: Discussion of multiple of suicide attempts as a response to chronic pain and gaslighting. * * *

Jemma-Tiffany is a 17-year-old writer, passionate patient advocate, and founder of Hyperacusis Awareness. Having grown up with severe hyperacusis (a rare and poorly-understood disorder that causes her to experience physical pain from everyday sounds) has motivated her to raise awareness of others with similar conditions. Through her various efforts, Jemma has gained experience in patient advocacy and legislative change campaigning, and has been able to participate in numerous awareness-raising events. The goal of her work is to create a world in which those with hyperacusis, chronic pain, and rare disease are believed — and are offered all the unique environmental modifications and services they need to live pain-free, comfortable lives. Her current advocacy projects include: adding a title 6 (Telepresence and High-Level Sensory Modifications) to the ADA; collaborating with research scientists and the American Academy of Audiology to establish clinical practice guidelines to protect those with hyperacusis; establishing a national awareness week for the condition; and a recent Hyperacusis Awareness Conference; as well as a campaign to extend distance-based learning (implemented during the COVID-19 pandemic) for disabled students in need. Jemma-Tiffany has been featured and published by Migraine Magic, PatientDX, the Hearing Health Foundation, the American Chronic Pain Association, Rare Youth Revolution, and The Third Estate, among others.

Takeaway

Transcript

Jemma-Tiffany Hyperacusis Awareness YARR NORD rare disease hyperacusis research Uninvisible Pod

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In the meantime, check out this related episode:

105: Brittany Sumner

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