Welcome to Episode 43 of Live & Learn. This week Megan speaks with Janna Linke, founding board director and clinical education lead at Connective Tissue Disorders Network Australia, and Holley Jones, kindergarten teacher and CTDNA ambassador. Drawing on professional, lived and carer experience, they discuss heritable connective tissue disorders, invisible symptoms, delayed diagnosis, disrupted schooling, and the flexible support students need to stay safe, understood and connected to learning.
Heritable connective tissue disorders (HCTDs) are genetic conditions that can affect many body systems, including joints, skin, organs and blood vessels. They include Ehlers-Danlos syndromes, hypermobility spectrum disorder, Marfan syndrome and Loeys-Dietz syndrome. CTDN Australia is Australia’s peak not-for-profit organisation for people impacted by heritable connective tissue disorders, supporting education, advocacy, research and connection across the community.
Read the transcript here.
