Wednesday 6 March 2019

Rare Disease Day shock

How did you spend Rare Disease Day?
American Jordan Flake and her son were forcibly removed from a US airplane for having a skin disorder similar to Mui’s.
The impact of a visible difference on individuals and their families is enormous.
As a family we’ve experienced fabulous moments… met wonderful people...
There have been bad times too...
Pointed at, laughed at, stared at, spat at, screamed at...
Daughter unwanted by her local international school, banned from her school bus, banned from areas of her school, banned from the pool of an international hotel, thrown out of a restaurant...
We live in Hong Kong. People are quick to tell us: "People behave far better in the West."
For sure there are cultural differences but there are challenges everywhere.
This year on Rare Disease Day, Jordan Flake was with her son on American Airlines.
Jordan and her son, like Mui, have a type of ichthyosis. 

Here is a link to the Washington Post article:…/american-airlines-apolog…/…

Here is a link to a statement the Ichthyosis foundation FIRST made: 

Please "Share" and "Like" to help our story raise awareness amongst the general public and decision-makers. Thanks Tina, Mui & me (Rog)

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