Rare Disease Day - 2019

Discussions about the illness, treatments, doctors, etc.

Rare Disease Day - 2019

Postby PattiG » Wed Nov 21, 2018 7:56 pm

Here is an opportunity to share your story and raise awareness!
C'mon, you can do it. :)
https://www.rarediseaseday.org/tell-you ... vkvDA7bhqo

Well wishes,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
Moderator
 
Posts: 1095
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

Re: Rare Disease Day - 2019

Postby PattiG » Thu Dec 20, 2018 3:05 pm

While I realize central pain syndrome, CPS is the topic of my vid, I acquired CPS secondary to a thalamic CM bleed and surgery. I'm happy! the vid has been published on the RDD site! https://www.rarediseaseday.org/stories/6327
Whether it's a vid or a simple written story, this is an excellent opportunity to share your story and raise awareness, while letting others know they're not alone. Writing your story is also cathartic. :)
Happy story telling! :) https://www.rarediseaseday.org/tell-your-story

Best wishes,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
PattiG
Moderator
 
Posts: 1095
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon


Return to Questions and Information About Cavernous Angioma

Who is online

Users browsing this forum: No registered users and 3 guests

cron