Rare Disease Day 2020: Vasculitis Diagnosis 8 Years On
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- čas přidán 7. 09. 2024
- A little bit about my experience with Granulomatosis with Polyangiitis after being diagnosed in 2012, and where I am now. This is in support of Rare Disease Day Saturday 29th February, 2020 - the aim is to raise awareness for Rare Diseases in order to share support for those who need it.
Rare disease day website: www.rarediseas...
Vasculitis UK Website: www.vasculitis...
My previous videos on Vasculitis:
Rare Disease Day 2015, My Experience with Vasculitis: bit.ly/2T9WW7d
What does a Rituximab Infusion Look Like?: bit.ly/3ctPVWG
Rare Disease Day 2016, My Patient Voice: bit.ly/2PBHdeZ
Intercalation Experience: bit.ly/32B9gAu
Rare Disease Day 2017: Research : bit.ly/3ci0lsc
I'm not too active on the CZcamss any more - but feel free to subscribble if anything does happen over here, or follow me on Instagram/Twitter: @moleybanter :)
Your positivity is needed!!!! Thank you for making it so not scary
So lovely to see your face on the CZcamss again! Very sorry about your journey, but glad you're feeling better now. Great idea to post a video to share your experience. I'm sure it will be very helpful to people who are looking for information/support.
stay strong and i hope it will be good for ever...
it is so hard to find any ppl with vasculitis.. I still didnt find anyone with my kind of vasculitis :P MPA - Microscopic polyangiitis... I got diagnosed december 2004... it was a hard way to the diagnosis.. and I had a kindda trastic fast outbreak.. still wasnt easy to find what it was... I had purpura but it disapeared quite fast so it was takes as alergy? and forgotten.. but then I got infected joints.. it was taken as.. well can happen lol.. it went away.. then they found I had anemia.. i had a ton of side effects but i was taken as a little soft teenage girl that is dramatic :P and it is puperty not a sickness -_- (fatighe, extreme sweating, dizziness, nose bleeding).. coz my anemia didnt react to meds.. and i got purpura on my palms XD they send me to the hospital where they made more blood work and found out that my anemia was from kidneys.. kidney failure level 3... so i was moved to nefrologists.. where my kidneys failed after 1 week completly... so dialysis etc... they started searching hard to find out why my kdineys died coz I ha dno kidney disease in itself.... after some time and expecting some other illesses that werent confirmed (they knew then it is autoimmune tho).. then they found what it was and i got diagnosed with MPA.. and got tons of steroids to cool it down so it wont kill my lungs as well :P but yea.... my MPA is on bay for the past 15 years.. I had just 1 small light just purpura flare up... away fromt hat I am just weak... but.... the kidney thing!!!!!!!!!!!! damn it is hell on earth!!!!!!! :(
and also.. still int he air.. a flare up can come any time and... would probably try to go on my lungs but.. they keep an eye on it so if it ever happens to catch it fast so my lungs wont get damaged permanently... hopefully i will never get a hard flare up again and keep it just at some joint pain and purpura stuff.... the kidneys are hard enough... and from kidneys come other problems.. and fromt he medc also soooooooo...... XD too much
Same. Diagnosed in 2003 while attending grad school. Did a number on my kidneys, but they survived. Still stage 3B, chronic kidney disease from MPA. Got gout from the diuretics. No problems with heart. Finally, living in rural Arizona, have a doctor team working together to keep me to old age. Keep up the nutrition and exercise. -I got this after surviving cancer.
You are the best. I can relate since GPA has been a part of my life. Great explanation of it all. Hope your having a wonderful life!
Happy to see your face in my sub box! Thank you for sharing your story, Jess. xx
Thank you so much for sharing ur story 🥰
Thank you for sharing, made my day!
Amazing video Jess! so glad to see you better and talking about it all :)
Amazing...I was also diagnosed with wegeners granulomatosis in 2012 and on steroids prednisolone...I have lost my nose 😓and also my menstrual cycle since 2012 because the use of steroids...I am also facing hearing problem...what about your nose and periods cycle
How are you doing?