Vasculitis Awareness Month Video - Living wi... - Vasculitis UK

Vasculitis UK

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Vasculitis Awareness Month Video - Living with an Autoimmune Disorder.

John_Mills profile image
John_MillsVolunteer
13 Replies

To mark Vasculitis Awareness Month, Kelly Jefferies (supported by Shanali Pereira) has produced an Awareness Video: "Living with an autoimmune disorder"

winster.org/mp4/Livingwitha...

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John_Mills
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13 Replies
amms43 profile image
amms43

Oh dear, the video rings so many bells. I tend to believe that these feelings and emotions are mostly me being rather wet and feeble, but then I find it is quite common among fellow sufferers. I feel my world has shrunk so much and try as I may to keep going, my ability to do so seems to decrease steadily. Of course I am getting older all the time but I dread losing my independence. Hey Ho. Onward and Upward.

Peep3 profile image
Peep3

This is my husband to a tee, and unfortunately my daughter has EDS so tis her as well. It's worrying that there are so many people now with invisible diseases.

PMRpro profile image
PMRpro in reply to Peep3

There always have been - but they didn't know!

Thelmarina profile image
Thelmarina in reply to PMRpro

😂

Katie18 profile image
Katie18

Would it be possible to put this video on the Vasculitis UK website so that we can share it on social media to help raise awareness please?

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to Katie18

It is on the vuk website under the heading News 😊

Katie18 profile image
Katie18

Sorry it’s already on there I’ve found it 😀👍 thank you

PattyMPA profile image
PattyMPA

Thank you to the creators of this nice awareness video.

PattyMPA profile image
PattyMPA

I notice a lot of us have bad hips and leg pain since dx of ANCA vasculitis. Mine is hip bursitis. My Rheum doesn't think it is Mononeuritis Multiplex but I wonder. Are we suffering this due to the high dieses of Prednisone breaking down our hips? I also gained 40 lbs since Jan 2018 when I was dx abd started on high dose Pred. Down to 1 mg now for past 2 mo.

StephanieDiane profile image
StephanieDiane

Hi John, how can I share this video with my friends on Facebook

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to StephanieDiane

It is now on the vuk website under the heading News 😊

Katie18 profile image
Katie18 in reply to Suzym2u

Hi Suzy I really like the daily facts that you are tweeting from @vascuk throughout the month 👍

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply to Katie18

Written by Kelly one of VUKs trustees ...Kelly also created the video 😊

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