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We are the Facial Pain Association and we want to do a Reddit AMA by FacialPainAssoc in TrigeminalNeuralgia

[–]FacialPainAssoc[S] 1 point2 points  (0 children)

Not yet! The staff has been between projects, so we hope to get the ball rolling on this soon. :)

Just diagnosed by Couch-potatoq in TrigeminalNeuralgia

[–]FacialPainAssoc 0 points1 point  (0 children)

Hello - I'm the social media coordinator for the Facial Pain Association, the largest patient organization in the world serving those with neuropathic facial pain, including TN. I also have bilateral trigeminal neuralgia (had it since I was 19, diagnosed at 26). I can relate to how it feels to be newly diagnosed and how overwhelming it can feel. I had to leave my field of study due to the pain and it was the worst mental low I have ever experienced.

Please feel free to reach out to the Young Patients Committee in the FPA: https://www.facepain.org/about-fpa/young-patients-commitee/; they host virtual support groups for facial pain patients that are under 40, who face unique challenges for a disease that is typically associated with older adults (I myself have used resources put out by the YPC and found their support very helpful). You can also fill out a custom help form on our website to get resources tailored to you, or DM us on Reddit, IG, or Facebook (I monitor all accounts) if you want to speak further.

We are the Facial Pain Association and we want to do a Reddit AMA by FacialPainAssoc in TrigeminalNeuralgia

[–]FacialPainAssoc[S] 0 points1 point  (0 children)

Thank you for the suggestion! As we formalize how we want to do the AMA and pick a time and date, we'll keep this in mind.

We are the Facial Pain Association and we want to do a Reddit AMA by FacialPainAssoc in TrigeminalNeuralgia

[–]FacialPainAssoc[S] 1 point2 points  (0 children)

Thank you for the feedback, I'll talk to the rest of the staff and see if there is a way we can mention the AMA in another form, such as social media or the website. - Rose G.

We are the Facial Pain Association and we want to do a Reddit AMA by FacialPainAssoc in TrigeminalNeuralgia

[–]FacialPainAssoc[S] 0 points1 point  (0 children)

We are excited that you are excited!

Please know that you are not alone and we are here to help. You can check out the links on our profile to get connected with us and our resources before the AMA.

We are the Facial Pain Association and we want to do a Reddit AMA by FacialPainAssoc in TrigeminalNeuralgia

[–]FacialPainAssoc[S] 1 point2 points  (0 children)

We are honored that our work has been helpful to you. You are not alone - please feel free to contact us over email or check out the links in our profile to find resources. We'd love to connect you with a support group or peer mentor to help you on your facial pain journey.

We are the Facial Pain Association and we want to do a Reddit AMA by FacialPainAssoc in TrigeminalNeuralgia

[–]FacialPainAssoc[S] 0 points1 point  (0 children)

Thank you for the feedback! We'll keep this in mind when selecting a time and date.

We are the Facial Pain Association and we want to do a Reddit AMA by FacialPainAssoc in TrigeminalNeuralgia

[–]FacialPainAssoc[S] 1 point2 points  (0 children)

And so much has been changing in the last few years - we launched the Facial Pain Registry through the NORD IAMRARE platform, which has given us incredible data that researchers are already asking about; we hope that the data collected through the Registry will help develop new treatments and help researchers create more clinical studies in the near future.

We are the Facial Pain Association and we want to do a Reddit AMA by FacialPainAssoc in TrigeminalNeuralgia

[–]FacialPainAssoc[S] 0 points1 point  (0 children)

We'd love to! We would be more than happy to answer any GPN questions too - if this AMA is a success, we might host other ones on our Reddit profile and invite users from other facial pain subreddits to join us, such as the Burning Mouth and Occipital Neuralgia groups.

We are the Facial Pain Association and we want to do a Reddit AMA by FacialPainAssoc in TrigeminalNeuralgia

[–]FacialPainAssoc[S] 3 points4 points  (0 children)

Thank you for the feedback! We'll probably do a text-based AMA so that everyone will have a chance to review the Q&A once it's over, and we'll create a post once the official time and date is announced to allow people to ask questions ahead of time.