PSSD Awareness Campaign 100 Stories for Rare Disease Day - Why your story matters

[pssd2020]

Hello everyone

 

We’re working with the International PSSD / PFS / PAS Federation. The “Post Finasteride Syndrome” (PFS) and the “Post Accutane Syndrome” (PAS) are post-drug syndromes that are similar to PSSD. All three syndromes lack awareness and that’s what we want to change. You’ve probably seen the posts we’ve been making to request that people tell their stories before Rare Disease Day on 28 February. The goal is to get 100 PSSD, PFS and PAS stories published online.

 

You might be thinking:

 

“Why should I bother to tell my story?”

“It is no use telling my story.”

“I don’t feel comfortable telling my story.”

 

·         It is SO IMPORTANT that everyone with PSSD, PFS and PAS stands together and lets the world know what has happened to us.

·         The more people that tell their story, the more people will know about PSSD, PFS, PAS. The More people know, the more people will be

          concerned and want to help. This could happen to them, to their family member, to their partner.

 

·         The more the people within the medical community know about PSSD, PFS, PAS, the better the chances of the medical community changing its

          attitude. When enough people say: “No. This is not right. It must change.” This is when change happens. This is what can lead to public research

          funding becoming available to build upon the research we are all currently contributing to funding. This is what can lead to treatments being

          developed for the conditions.

 

·         You needn’t feel embarrassed to tell your story. You haven’t done anything wrong. You just trusted a doctor. There is no shame in having PSSD,   

          PFS or PAS. People aren’t going to negatively judge us for sharing our stories. They will want to help us to make things better.

·         You needn’t reveal your identity. You can choose a ‘pen name’ and an avatar.

·         It might be upsetting for you to recount your story. No doubt, having PSSD, PFS or PAS is not a walk in the park. But when you’ve done it once, it

          can feel liberating. You won’t need to do it again because you’ll have the story ready to use, if you need it. What’s more, the community will be   

          able to re-use the story to raise awareness.

         

I hope that you will decide to write your story and publish this through medium and twitter. You can also send it to the rare disease day website.

We have a template (see below) to help you write your story. You can write it in your native language or in English. If you need help, let us know!

 You can contact us by finding our websites through google, or send me a message through finding antidepressants if you prefer.

 

Emily                                  Sandra                                                  Ben

PSSD Canada                   PSSD Hilfe Deutschland e. V.            UK PSSD Association

 

 

 

PSSD / PFS / PAS Stories – Draft Guidelines

 

Limit of 1250 words.

These are general guidelines for writing your personal PSSD/PAS/PFS story. Having these stories publicly available is an excellent method for bringing attention to our condition.

 

Name (can be real or chosen):

Age:

(1)    Why did you take antidepressants / finasteride / accutane?

 

(2)    What was your life like/ what were you like before taking the drug?

 

(3)    How long did you take the medication?

 

(4)    Describe your experience while taking the drug – Did it solve the original problem? Did it give you any side effects?

 

(5)    Describe what happened when you got PSSD / PFS / PAS. When was this? How did it make you feel?

 

(6)    Describe the main symptoms of your PSSD. Explain why you are sure that these symptoms were caused by the drug and cannot simply be explained by psycho-somatic (mental health related) difficulties.

 

(7)    What did you do next? What has your experience been like trying to get medical help with PSSD / PFS?

 

(8)    In total, how long have you been struggling with the symptoms caused by the medication?

 

(9)    How does PSSD impact on your life, your relationships with partners, friends, family?

 

(10)What do you think would improve the situation for PSSD/PFS/PAS sufferers?