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Hello All,

I hope everyone is well..

Just going to post and share something spontaneous as have not posted in a while.

I have had really strong HPPD for 28 years now. It has been been quite a journey and battle. 

At the end of the day, I'm feeling frustrated that more action is not being taken sooner to find an actual cause, treatment or cure. I know that some study's are being conducted although with Covid 19 it has slowed things down temporarily.

I feel like people in general would have no fucking clue what having real HPPD is actually like, and likely  could not handle it. I have learned to accept it mostly, live and get along despite all symptomologies although it really takes its toll especially over the long term.

I wish we could do more, like more sufferers banding together to fight for whatever needs to happen to accelerate research. Like I feel enough is enough. 






Edited by Spartan
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Hey Spartan, it's frustrating, I know. Sadly, health, like most every other aspect of life is dictated by business interests as much as anything else. We have a rare illness that also has the stigma of drugs attached. Very little chance of large scale, meaningful study. The good news is that things like anxiety get big funding and might throw up some help for hppd. Fingers crossed.

Stay safe

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