BFM 89.9

HIGHLIGHTS 
Podcast  >  Bigger Picture  >  Health & Living  >  Rare Disease Day 2022: Young People Living With A Rare Disease (Part 1)

Rare Disease Day 2022: Young People Living With A Rare Disease (Part 1)

Jonah Michio Tan, Living with Hajdu-Cheney Syndrome | Yumi, Mother

28-Feb-22 16:00

Rare Disease Day 2022: Young People Living With A Rare Disease (Part 1)

One person living with a rare disease may feel unseen and unheard, among the minority. But collectively, the voices from the community of people with rare diseases are significant, and can make a difference. In December 2021, the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” was adopted, giving visibility to the rare disease community on the global policy landscape. This Rare Disease Day, we hear from two young people on how their rare condition affects their lives, presents challenges to growing up, and what kind of actions they would like to see from society to support them. In the first part of this special feature, Jonah Michio Tan and his mother Yumi tell us about the challenges of living with Hajdu-Cheney Syndrome, an extremely rare condition that causes defects to a child’s bones, teeth and joints.

Image credit: Miyumi Yanagi

Produced by: Tee Shiao Eek

Presented by: Tee Shiao Eek


This and more than 60,000 other podcasts in your hand. Download the all new BFM mobile app.

Categories:  diseases and conditions

Tags:  Hajdu-Cheney Syndromebrittle bonethe bigger picturehealth and livingosteoporosischildrengenetic





Play / Pause

Listen now : BFM 89.9 -- The Business Station

Today’s Shows



11:00 AM

Best of Enterprise

(REPEAT) Dr. Paul Watters, CEO of Cyberstronomy and Honorary Professor at Macquarie University, Sydney talks about the impact of illegal streaming websites on cybersecurity.

12:00 PM

Popcorn Culture

(REPEAT) We review One Battle After Another, Leonardo DiCaprio’s first collaboration with acclaimed director, Paul Thomas Anderson - and discuss your favourite of Leo's performances.

1:00 PM

Cruise Control

(REPEAT) How does the Zeekr 009 Executive fair against its competitors? Daniel shares his thoughts.

2:00 PM

Matt-Splained

(REPEAT) As workplace horror sweeps the Emmy’s, Rich and Matt wonder if it’s time to fortify that cubicle or resist return to work mandates with your life.

3:00 PM

Earth Matters

(REPEAT) Tourism shapes not just where we travel, but also our economy, communities, and natural heritage. We speak with the co-founders of Sustainable Tourism Malaysia about their journey, lessons after three years, and hopes for the future of tourism here at home.

4:00 PM

Bar None

(REPEAT) We look at the world of skateboarding from a competitive angle and how much it has grown here in the country.

5:00 PM

BBC World Service

The Life Scientific speaks to Jacqueline McKinley, a Principal Osteoarchaeologist with Wessex Archaeology.