Rare Disease Videos on TED

I have been exploring videos about HSP on YouTube for the UK HSP Support Group, principally to be able to add videos made by/about anyone with HSP to their "Those with HSP" playlist. https://www.youtube.com/channel/UCkxTfcI4tKYNMYsgzVumpWA/playlists

I also had a brief look at TED to see if there were any relevant videos as well. I didnt find any with/about HSP, but there are a few interesting ones about rare diseases. These all have parallels with the HSP world - enjoy watching!

Sharon Terry had two young children who were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). Sharon explains how she and her husband became citizen scientists, working to find the gene behind PXE and establishing mandates for researchers to share biological samples and work together.

https://www.ted.com/talks/sharon_terry_science_didn_t_understand_my_kids_rare_disease_until_i_decided_to_study_it 

Jennifer Brea became progressively ill with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. Jennifer describes the obstacles she's encountered in getting diagnosis and seeking treatment for her condition with root causes and physical effects which are not understood, and her mission to document the lives of patients that medicine struggles to treat.

https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose 

Georgia Hay tells the story of Lily, who suffers from a chronic rare disease. Georgia talks about her diagnosis journey and the more general diagnosis journey for those with rare diseases, and speculates how work in rare disease diagnosis may map out the future of work for teams and organisations allowing people to work effectively alongside technology.

https://www.ted.com/talks/georgia_hay_what_diagnosing_rare_diseases_can_tell_us_about_the_future_of_work_jan_2018 

Sue Austin talks about the tremendous sense of freedom she got from starting to use a power wheelchair, and the artwork she has made to challenge preconceptions of wheelchair use. She conveys the spirit of wonder she feels wheeling through the world and underwater, and the freedom of thought from seeing something so unusual!

https://www.ted.com/talks/sue_austin_deep_sea_diving_in_a_wheelchair 

You can also read more about Sue here:

https://blog.ted.com/see-much-more-of-sue-austins-incredible-wheelchair-art/