Beth Willis has been a supporter of the HSF for many years, devoted lots of her own time, skills and energy and always raises awareness of Hughes syndrome. As a RADA trained actress, she is the prefect person to give a patient's perspective and has given many talks both at medical events and fundraisers.
She has now gone viral and got the message on the web after a BBC journalist approached her, initially because he wanted to do a piece on her as an actress. Beth didn't want to waste the opportunity to raise awareness so please have a look at:
someoneoncetoldme.com/galle...
Thank you beautiful Beth! 
Raised intra cranial pressure
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