Dec 2019 :
Young lady from Florida talks about having Trimethylaminuria (TMAU) on the local news.
15 year old Alyssa talks to her local news station about having TMAU.
The community thank you Alyssa, as it is a very taboo subject.
Young lady from Florida talks about having Trimethylaminuria (TMAU) on the local news.
Alyssa was in kindergarten in North Okaloosa County, when her mom told her she had a rare disease commonly called "fish odor syndrome." Sometimes the smell is not noticeable at all. Other times, such as when she exercises, it can be very strong ...
... Some people with Trimethylaminuria fight depression and thoughts of suicide. Alyssa is determined to live on her terms. As she heads into her mid-teens, when dating could come to the forefront, she says she's not afraid. Alyssa explained, "It's like if they don't want to be with me or be around me because of it, then they don't deserve me. And I don't care."
Link to transcript and video : weartv.com
15 year old Alyssa talks to her local news station about having TMAU.
The community thank you Alyssa, as it is a very taboo subject.
Her attitude is fantastic.
Note : the item was on the news on 25 Dec 2019
Possible actions :
Send a link to the NIH Director Francis Collins.
Possible actions :
Send a link to the NIH Director Francis Collins.
Ask to get on local news ?
Ad campaign ?
Other ideas ?
Comment :
Its been a long time since a TMAU item was on TV news or TV at all. Maybe since people now take to youtube, which is there for everyone always.
It's not clear how much impact such an item has on awareness, but everything is welcome !
Probably the big impacts would be high-audience shows, popular youtube channels, or an ad campaign ?
Ad campaign ?
Other ideas ?
Comment :
Its been a long time since a TMAU item was on TV news or TV at all. Maybe since people now take to youtube, which is there for everyone always.
It's not clear how much impact such an item has on awareness, but everything is welcome !
Probably the big impacts would be high-audience shows, popular youtube channels, or an ad campaign ?
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2 comments:
I hope we can be friends alyssa i am from canada i am also a tmau patient....i dont have mich friends because of my tmau....
I am pretty sure I have TMUH but nobody test here how can I get tested? This has ruined my life...need help!!!