100 PSSD Stories For Rare Disease Day (28 February) - Update and Guidelines

[climb]

PSSD Awareness Campaign - Why your story matters


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 https://medium.com/ and twitter. You can also send it to the rare disease day website: https://www.rarediseaseday.org/
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!

Emily (PSSD Canada) pssdcanada@gmail.com, https://pssdcanada.squarespace.com
Sandra (PSSD Hilfe Deutschland e. V.), pssdhilfe-de@gmx.de, www.pssd-hilfe.jimdo.com
Ben (UK PSSD Association), pssd-uk@protonmail.com, www.pssd-uk.org


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?

[Broken]

Are all ten points of the above guideline necessary for one's submission? I have no qualms if this is the case, however I'd already wrote a document that addresses most of these questions albeit in a different order. I'd like to not restructure too much of my entry as I feel it won't be as organic or convincing otherwise.

Furthermore, does there happen to be a specific email address or link I can send my text file to? Is there a mandatory text format (e.g. .doc, .docx et cetera)?

[climb]

Are all ten points of the above guideline necessary for one's submission?

Furthermore, does there happen to be a specific email address or link I can send my text file to? Is there a mandatory text format (e.g. .doc, .docx et cetera)?

Not necessary to follow all the points in the guidance. It's just to help people who are finding it difficult.

The ideal thing to do is:

(1) click on the 'tell your story' link on the rare disease site: https://www.rarediseaseday.org/tell-your-story
and submit using their online form (ignore the disease category box)

(2) create an account on 'medium' and post you story there: www.medium.com
It's really easy to do. I was surprised. Literally takes 5 minutes!
So far, rare disease day seem to have been posting most PSSD stories submitted. Hopefully they'll continue to do that but it's important to have the stories published online elsewhere too for maximum exposure, and medium enables us to reach another audience because you can tag your article so it appears in the feeds of people interested in certain subjects.
There are at least 4 PSSD stories on medium so far.

(3) Create a Twitter account so that we can all let the world know about this on rare disease day and afterwards.

(4) you can also send your story to any of the PSSD patient groups' email addresses. We can help with proof reading and refining them.

If you don't want to upload to rare disease day and medium, you can just send to one of the associations. However, the most beneficial action is clearly to upload to rare disease day, post on medium, join twitter. It can be done anonymously, and doesn't take much time, so let's hope everyone contributes!

Thanks for contributing your story!

[heymartinn]

Makes me feel hopeful seeing these initiatives, going to contribute as soon as I'll manage to write it all down. Is there approximate number on how many stories we already have?

[Meso]

I've submitted my story to the rare disease day website. It's a very important step. Thanks climb!

[climb]

Makes me feel hopeful seeing these initiatives, going to contribute as soon as I'll manage to write it all down. Is there approximate number on how many stories we already have?

Great, thanks a lot, we're looking forward to having your contribution.

It's difficult to be exact on numbers so far because people are submitting by many different channels. Some have sent direct to the PFS Foundation email address, some have sent direct to the PSSD group emails, some are already posted online at medium or on our PSSD Patient Group Websites, some have posted direct to the rare disease site.

I estimate at about 30 + so far, so it's a good start, but I'd like to really encourage everyone to stand together and participate. Let's use this opportunity to make our presence felt and show them that PSSD should be a registered medical condition in need of public research funding.

If anyone has any questions or wants some help, please get in touch!

[climb]

I've submitted my story to the rare disease day website. It's a very important step. Thanks climb!

Nice one, thanks a lot mate!

If the Rare Disease site start slowing down on the publishing of PSSD stories because they think we're hogging too much space on their site, we'll need to continue to publish elsewhere, so we'll keep an eye on that situation. Hopefully, yours, mine and others will be on their site soon along with the ones that are already on there.

[climb]

An Update on this:

6 more PSSD and 1 PFS stories have been published on the rare disease day website.

There's been good support for the initiative so far, but we need to keep going and not miss this opportunity to make a statement and raise awareness.

Please use the instructions and tell your story on the rare disease day site and elsewhere online (www.medium.com).

https://www.rarediseaseday.org/tell-your-story

Wishing everyone a good weekend!

[Broken]

I recently looked on the Rare Disease Day website to see if my story was published. I visited some weeks ago and sent in my story, however it is not present. I made sure to follow the guidelines present and did not include any crude terminology or rhetoric. I find it discouraging that one is called to dredge up such experiences only to have them pushed to the wayside (nothing I'm not used to, but counter-intuitive to write the least.)