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Great raising awareness thanks to Kelly

PostPosted: Mon Feb 20, 2017 10:41 pm
by malory
This is fantastic raising awareness and has prompted a LOT of discussion and comments. I imagine Daily Mail screened the comments but, even so, It's really worth reading the comments because they are very interesting. I detect a slight improvement in attitude to the condition from the general public. Many commentators say they knew of somebody with the condition/shared same symptoms. The sufferer's right to work was discussed at length. Great that this article has prompted such debate. This has really raised the profile of this illness. Let's share Kelly's work with others and help her achieve her objective of raising awareness.

http://www.dailymail.co.uk/health/artic ... l#comments

https://youtu.be/ZAO1vMiMbPI4

Re: Great raising awareness thanks to Kelly

PostPosted: Tue Feb 21, 2017 2:10 am
by PoetFire
Thanks to Kelly.
I wonder if this was from the recent media request ?

Daily Mail is the biggest world online news site.
The story already seems to be in the Health section top 10 for the last 30 days.
5k shares.

And Barcroft seem to be one of the biggest youtube channels (2.5 million subscribers).
It got 125k views on day 1.

exposure doesnt get much better.

Re: Great raising awareness thanks to Kelly

PostPosted: Tue Feb 21, 2017 10:36 am
by sweatybetty
Well done Kelly

Thank you for being brave enough to speak out

I think 'Barcroft media' made one of the first in depth videos about Trimethylaminuria in c2007. They profiled about 3 or 4 cases including a 10 year old boy. They handled those stories and Kelly's sensitively and impressively.

I keep thinking I would like to share my story but am not brave enough at the moment.

Some of the comments on the Daily Mail article were very empathetic and compassionate but others still seem to think that medicine must have an cure for us or think that there is a 'proven diet treatment' whereas most of us with the condition are aware that the choline restriction diet does not always result in bringing TMA to a 'normal level'.

It also made me question what was a fair balance in terms of accepting we have a condition that can impact others but being able to live our lives. I worried about Kelly having to work night shifts(or perhaps having to make a choice to work these quieter shifts) and the impact this may have on family life and her choices.

Re: Great raising awareness thanks to Kelly

PostPosted: Tue Feb 21, 2017 5:01 pm
by PoetFire
thats right

barcroft did :
'help i smell of fish' https://youtu.be/wk3OKU-UX5c
also the london girl singer last year. https://youtu.be/SN-7KWLqjMw

they seem to be keen to do a 'born different' series on their youtube channel.
i think this video has 180k views now in less than 2 days.

no-one should feel pressured to do such media work.
of course we all benefit from it and are grateful.

Re: Great raising awareness thanks to Kelly

PostPosted: Wed Feb 22, 2017 1:22 pm
by PoetFire
itv 'this morning' interview
https://youtu.be/DuWR3bjmmPs