Rare Disease Day 2025 - some thoughts as a vasculitis patient. My annual post about Rare Disease Day, including links to further thoughts from me about related topics. https://vivsacademicblog.wordpress.com/2025/02/28/rare-disease-day-2025-some-thoughts-as-a-vasculitis-patient/ #RareDiseaseDay #health #disability #NHS #medicine #vasculitis

So heavily sedated and sleeping at mo (among other increased neuro symptoms) as latest consultant-pushed try at getting my immunosuppression dose a bit lower fails. Glum from it all! Grateful to manage anything productive in the circumstances :) Happy managed historical research late this afternoon. #neuro #autoimmune #immunosuppression #vasculitis #cerebralVasculitis #illness #chronicIllness

It's Rare Disease Day again, and time to reshare my experiences with a 1 in a million (literally!) progressive neurological disease, cerebral vasculitis. I've written a lot about it before, but I think my "Implications of living with a rare disease" blog post is a good one, which also addresses the experiences of other people living with other rare diseases. https://vivsacademicblog.wordpress.com/2016/02/29/implications-of-living-with-a-rare-disease/ #RareDiseaseDay #RareDiseaseDay2024 #Vasculitis #Neuro #NHS

“Compared with non-COVID controls, patients with #COVID19 presented an increased risk of developing pernicious anaemia; spondyloarthritis; other autoimmune arthritis; #psoriasis; #pemphigoid; #Graves' disease; anti-phospholipid antibody syndrome; immune mediated #thrombocytopenia; #MultipleSclerosis; #vasculitis.” https://mstdn.social/@erictopol/110901766001133416

Digging out my schoolgirl #French to email #accordion makers #Maugein to tell them how phenomenally the new chromatic box #CBA seems to be helping my hand control generally, fighting my #neuro cerebral #vasculitis. 250 ish French words later and all done. It's a marvel how much French language I remember, even if I have to check a few words here and there. But I can write 90% of it in one go. Higher French in 1988/9 at #Hawick High #School was a very long time ago. #LanguageLearning #squeezebox

Delighted to manage 90 mins #accordion #practice, mainly trying #musicals tunes I'll do new arrangements of. Also played French #musette, Despacito, #ABBA, Bergerac, Spanish Gypsy Dances, #Scottish traditional etc. Been weaker on my right side since a huge cerebral #vasculitis relapse/ #stroke like thing in 2004. So it was marvellous to do well today. Here's a recording of a #GuysAndDolls tune A Woman in Love written as extra for the 1955 movie. Tentatively played here. #squeezebox #music #neuro

‘One guy came into A&E because his washing machine was broken’: my life as a #doctor in badly behaved Britain. Yes there are a lot of numpty patients at A&E. But as a volunteer for a charity for #vasculitis, I often hear already diagnosed vasculitis people having an appalling time there. Doctors don’t recognise something is seriously wrong in a crisis or dismiss patients as hypochondriacs. Or won’t deal with rare thing. Even when major organs at risk. It’s not right. https://www.theguardian.com/lifeandstyle/2023/jun/01/one-guy-came-into-ae-because-his-washing-machine-was-broken-my-life-as-a-doctor-in-badly-behaved-britain #NHS

Delighted to manage some #accordion practice, despite still recovering from a recent cerebral #vasculitis flare. I was very light headed, and struggling to read the music and control fingers. But so chuffed to play anything at all. Rattled through many favourite tunes, including lots of French musette, Bergerac and others. I didn't record anything but found after my husband recorded a bit on his iPad! My full of fluffs go at He's a Pirate from #PiratesOfTheCaribbean. #Squeezebox #music #neuro

Today is International Vasculitis Awareness Day. I’ve been living with cerebral vasculitis since age 22 in 1994. Here’s something I wrote about living with an invisible and fluctuating neurological illness. https://vivsacademicblog.wordpress.com/2018/10/21/dealing-with-an-invisible-and-fluctuating-neurological-illness/ #CNS #neuro #disability #chronicIllness #illness #vasculitis #cerebral #CerebralVasculitis #CNSvasculitis

Next #NephJC (for this week) is on the RITAZAREM trial

http://www.nephjc.com/news/ritazarem

Still dealing with a mini #neuro flare. Tonight my #hands are uncooperative blocks - a lot of my dinner ended up on my bib. And my #legs are incredibly numb and I’m light headed. Sadly this isn’t something the medics properly understand or can adequately explain. Living with a literally 1 in a million diagnosis we just deal with my symptoms. Fellow cerebral #CNS #vasculitis patients often report similar experiences. Meanwhile I'll be resting solidly for the coming days. #VasculitisAwarenessMonth

May is #vasculitis awareness month. Vasculitis is a #rare #autoimmune #disease that causes #inflammation in the #blood vessels, anywhere in the body. Here is my story, since 1994, when it started attacking my #brain. Years on I'm lucky to be here. My case is progressive, a cross between strokes and multiple sclerosis like symptoms. Read my story of wrong initial #diagnosis, long term #steroid and #chemotherapy treatment, and basically surviving. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #neuro #medicine #health

Wow.

#SARS2 invading the whole (mouse) body in visualized form.

Compelling visual evidence that this is not a respiratory restricted virus, but in fact a whole body #vasculitis

Why vasculitis?

Because #SARS2 binds to the ACE2 receptor, which is *everywhere* in your body.

Especially your blood vessels.

Check this out, & consider what it might be doing to your body.

13.5 hours sleep so far today, expecting to get to at least 15 hours by dinner time. Probably going to sleep through the #SherlockHolmes panel I was hoping to see at 6pm. But sleep wins during a #neuro flare and more generally with me now. #vasculitis #CerebralVasculitis #ProtectingMyDamagedBrain

Waking after 5pm again. Yup that. #neuro #vasculitis #CerebralVasculitis #YesICanSleepUpTo18HoursADay