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Showing results for tags 'advocacy'.
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I am here for several reasons. Foremost, my 23 year old son has HPPD and I am personally touched by this. His struggles parallel what others feel and experience as written here. Living with HPPD is a private hell – seems. It is met with misunderstanding and judgment from an insensitive society and an uninformed professional medical community, generally speaking, with exception of very few doctors who are HPPD champions. It seems most members here are unofficially diagnosed… seeking information what to expect, where to go, how to feel better, lead life unencumbered. What a Godsend this forum is. I am here because I believe HPPD sufferers need advocacy… This means caregivers and the community leaders are needed to speak for them when they cannot, to represent their needs, to make a difference, to carry a torch and make inroads in research and awareness. To YOU, I extend my hands to help, my heart, my time. I am a psychologist, researcher, and writer…. and I care very, very much. So many faces, different places, the stories so similar…. Too little resources, no place to turn, just each other to help. I am only one person, but bring it on… and let’s get started to do something good. Please visit my website, Faces of HPPD www.facesofhppd.com which is established as a project to compile information about HPPD from those who have received official diagnosis and treatment, so that all can learn about living with HPPD. Faces of HPPD is not intended to compete with this forum… but to expand the sharing of resources and knowledge. I hope in some way I can be a force to make a small difference. God speed to each and everyone of you! Doreen Lewis, PhD (in Florida)
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