Deaf Awareness Week 2022

Mitochondrial disease is a genetic condition that can cause a range of debilitating symptoms, including deafness.  As part of Deaf Awareness Week, the WCMR at Newcastle University and the UK Council on Deafness are highlighting the links between hearing loss and mito.

Mitochondrial disease and hearing loss facts:

• Hearing loss as a symptom of mitochondrial disease is common.

• Hearing loss affects between 50 and 80% of all individuals with mito, impacting on both communication and daily life.

• There are currently no pharmacological or cellular treatments for hearing loss and deafness.

• There is a widely accepted need for more research into treatments for hearing loss associated with mitochondrial disease, as reported in the top ten research priorities identified by the James Lind Alliance Priority Setting Partnership on Mitochondrial Disease.

• Mitochondrial disease-related hearing loss and deafness is often very gradual, with many patients unaware of a problem until communication becomes difficult when there is background noise.

• Hearing aids and cochlear implants are an important treatment for hearing loss but issues remain around their effectiveness, tolerability, and compliance.

• Sound amplification using hearing aids alone is often ineffective in individuals with mitochondrial disease. In such cases, hearing aids make sounds louder, but not clearer.

• There remains an urgent and unmet need to explore new strategies for patients with hearing loss and mitochondrial disease.

Below are quotes from our patient community that we are sharing to highlight the impact of hearing loss and deafness on people living with mito:

DAILY IMPACT – “I can’t talk on the phone anymore.”

MENTAL HEALTH – “I got so upset and frustrated…it’s a very high anxiety.”

LISTENING FATIGUE – “It’s taking my brain away listening. When you’re having to read subtitles all the time, its actually quite consuming on the energy you use.”

CAREGIVER DEPENDENCE – “She [caregiver] is my ears.”