Ethan Crough, Rare Disease Day 2022: Living with achondroplasia – Celebrating diversity and increasing awareness

Ethan Crough, a middle school technology education teacher, joins us for Rare Disease Day to celebrate diversity as a man living with achondroplasia. Ethan discusses his experiences of living with achondroplasia and highlights useful resources such as Little People of America, which provide support for people of short stature and their families. 

Touch Medical Media is supporting Rare Disease Day (28 February 2022) to shine a light on healthcare inequalities for people living with rare diseases, focusing on patient quality of life and the difficulty of diagnosing patients early.

Questions:

1. Could you tell us a bit about achondroplasia and how it affects your daily life? (1:02)
2. What resources or support have you found useful? (3:03)
3. What else is needed to improve the quality of life of people living with achondroplasia and their families? (5:05)

Disclosures: Ethan Crough has nothing to disclose in relation to this video.

Support: The production of this video was supported by Touch Medical Media.

Other content available in support of Rare Disease Day includes:

• Richard Keen, Rare Disease Day 2022: Rare bone diseases – Diagnosis, management and patient quality of life
• Damara Ortiz: The impact of Pompe disease and the importance of newborn screening
• Shekita Green: Living with neuromyelitis optica spectrum disorder (NMOSD) – A patient perspective
• Megan Hunter: Living with myasthenia gravis – A journey to diagnosis
• Spero R Cataland: Acquired thrombotic thrombocytopenic purpura – Risks, complications and the impact on daily life
• Said Beydoun: Understanding myasthenia gravis and the impact on patients’ quality of life
• Jackie Palace: Improving diagnosis and treatment of neuromyelitis optica spectrum disorder