"Look, this is what my rare disease is about" - use our #PatientJourney document on #CervicalDystonia to quickly and easily explain to others your rare condition. Be it your employer, your doctor, your friends or the health insurance. Hear about Monika Benson's story: www.youtube.com/watch?v=1A2W...
"But why can't you sit with your body twisted and the head facing on the computer?" This is what our ePAG Monika Benson, who is affected by #CervicalDystonia, got to hear from a health insurrance officer when trying to explain her condition years ago.
youtu.be/1A2W4tfH39w
#DystoniaAwarenessMonth: Do you know our #PatientJourney for #CervicalDystonia? It is available in 13 EU languages and free to download! For example in
Dutch: www.ern-rnd.eu/patientenrei...
Hungarian: www.ern-rnd.eu/betegut-cerv...
Spanish: www.ern-rnd.eu/patient-jour...
For anyone newly diagnosed with cervical dystonia or suspects it, this FAQ is really helpful: www.reddit.com/r/Dystonia/c... #dystonia #cervicaldystonia
Learn more about cervical dystonia and a reminder that I am looking for people with #cervicaldystonia to participate in some research!
Some more information about the ongoing research on how language may be affected by cervical dystonia or stuttering/stammering! If you are interested in participating contact me by email at Jessica.white2@ucdconnect.ie #cervicaldystonia #cerivaldystoniaresearch #stammering #stammeringresearch
How much do you know about #CervicalDystonia? #RareDisease, neurological... but do you know how everyday life looks like for people living with a rare disease? Watch Lily's journey as her disease progresses in our short movie - based on real experience: www.ern-rnd.eu/disease-know...
Probably throwing this into the void but are there any good online support groups for people with cervical dystonia out there? I can't find anything local. It would be nice to talk to others about the chronic pain and cognitive impairment. #cervicaldystonia #spasmodictorticollis
A mannequin esque style person with arms sewn onto their shoulders. Their forearms have been torn off and are seen below the shoulders/top of arms. The neck is twisted to the right, touching the right shoulder. The head is tilted to the right. There are visible tears in the figures body. As well as a zig zag lightening cut going down which has stitches holding it together. The zig zag cut goes from the top of where the neck is visible to the lower torso. The lower torso fades into a raggedy torn mess. This is a vent art piece about my cervical dystonia and trying to put into an image how I feels sometimes. Was made during a dystonia episode
A #cervicaldystonia vent #art piece in my #sketchbook
Dystonia hurts. And it's not always visible. But for some of us, it's agonising when it's visible and we're contorting (for those of us with spasms that contort)
I wanted to do a spooky art depiction of #dystonia and how it feels
