#vasculitis — Public Fediverse posts

It’s #RareDiseaseDay today. Here’s a link to my #vasculitis story about the neurological disease I fell ill with in 1994. 1 in a million incidence and frustratingly progressive in my case, despite throwing masses of treatment at it over the years since. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #Health #ChronicIllness

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

So, Bus-Tour ist gecancelt... Mein Freund hat anscheinend wieder mal einen leichten Schub von seiner Erkrankung mit bisher ungeklärter Ursache 😕
#unklareDiagnose #vasculitis

Ik had jaarlijks een bijeenkomst van mensen met #vasculitis. Sinds corona kon dat niet en vandaag was voor mij de eerste en de laatste omdat ik (en dat is zo zeldzaam als de ziekte zelf) beter ben verklaard. Deze ziekte kan namelijk altijd weer opvlammen. Behalve bij mij (*hoogmoeduit). Ik ben blij dat ik gegaan ben want ik was vergeten hoe heftig het was. En het heftigste is: je ziet het niet dus mensen denken vaak dat het wel meevalt. Bij mij en zo hoorde ik vandaag bij heel veel anderen.

''#Necropsy consistently revealed pulmonary #congestion and #oedema, and cerebrocortical malacia with #haemorrhage was also seen in the cat that survived for 10 days. On #histology, all cats had necrotizing #encephalitis and interstitial #pneumonia with pulmonary congestion, oedema, #vasculitis and vascular #thrombosis. One cat also had microscopic multifocal necrosis in the #liver, #pancreas and an adrenal gland.''

''#Necropsy consistently revealed pulmonary #congestion and #oedema, and cerebrocortical malacia with #haemorrhage was also seen in the cat that survived for 10 days. On #histology, all cats had necrotizing #encephalitis and interstitial #pneumonia with pulmonary congestion, oedema, #vasculitis and vascular #thrombosis. One cat also had microscopic multifocal necrosis in the #liver, #pancreas and an adrenal gland.''

''#Necropsy consistently revealed pulmonary #congestion and #oedema, and cerebrocortical malacia with #haemorrhage was also seen in the cat that survived for 10 days. On #histology, all cats had necrotizing #encephalitis and interstitial #pneumonia with pulmonary congestion, oedema, #vasculitis and vascular #thrombosis. One cat also had microscopic multifocal necrosis in the #liver, #pancreas and an adrenal gland.''

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

@bhawthorne @ToveHarris

It’s good that they call it #LongCovid. Imagine the panic if they would call it #diabetes, #dementia, #asthma, #vasculitis or #rheumatism. People would maybe even start protecting themselves.

So let’s call it #PASC or reference some other conditions nobody ever heard about. Preferably those which can be discussed as psychosomatic.

😃🥸🫠

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

I’ve never gone to A&E for a cerebral #vasculitis flare. Unless I have major #stroke it’s better for me to deal with myself. The closest I came was going when I had a hidden rampant infection causing sudden phenomenally high tachycardia (very alarming given I am severely immunosuppressed and this was in pandemic). I didn’t go to A&E but out of hours and was admitted to hospital overnight. But people facing sudden crises, which can affect major organs, should be able to get help. #NHS #hospitals

To be fair #vasculitis is a #rareDisease. My own primary cerebral vasculitis form is about 1 case per million people. But in a crisis, and especially out of hours, patients should be able to get urgent and appropriate help. And not be dismissed as hypochondriacs and sent away too readily without help. Timely treatment is vital to save organs from further damage. But too often getting that help is hard. #NHS #hospitals

‘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

#ANCA #vasculitis

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

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

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

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

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.

#COVID19 #LongCovid #sarscov2

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

Battling with the first thing Monday health centre phone queue. Still neurologically flaring so would struggle hugely to come in today. Huge thanks to the district nurse coming instead of my practice nurse appointment. I rarely have to switch re bloods but it can be a huge help. #NHS #NHSTayside #Housebound #Nursing #Medicine #HealthCentre #GP #neuro #flare #vasculitis

Slept for 13.5 hours today. Yup that! On plus after a run of bad nights I slept at night. #neuro #vasculitis #CerebralVasculitis #AtLeastItWasnt18Hours #WhereDidTheDayGo #Sleeping #Sedation #Unconscious

Slept for 13.5 hours today. Yup that! On plus after a run of bad nights I slept at night. #neuro #vasculitis #CerebralVasculitis #AtLeastItWasnt18Hours #WhereDidTheDayGo #Sleeping #Sedation #Unconscious

Slept for 13.5 hours today. Yup that! On plus after a run of bad nights I slept at night. #neuro #vasculitis #CerebralVasculitis #AtLeastItWasnt18Hours #WhereDidTheDayGo #Sleeping #Sedation #Unconscious

Slept for 13.5 hours today. Yup that! On plus after a run of bad nights I slept at night. #neuro #vasculitis #CerebralVasculitis #AtLeastItWasnt18Hours #WhereDidTheDayGo #Sleeping #Sedation #Unconscious

Slept for 13.5 hours today. Yup that! On plus after a run of bad nights I slept at night. #neuro #vasculitis #CerebralVasculitis #AtLeastItWasnt18Hours #WhereDidTheDayGo #Sleeping #Sedation #Unconscious

Today is #RareDiseaseDay, so here’s a link to my writeup about the 1 in a million #disease or so, primary cerebral #vasculitis, I’ve lived with since 1994. Inflammation in the blood vessels in my #brain. In my case never gone into remission and #progressive. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story

Back from my first #rheumatology face to face #hospital #appointment in 3 years. I've had an auto immune disease #cerebral #vasculitis since 1994. But with the #Covid #pandemic many rheumatology patients were not seen at hospital for long periods. Very pleased with today's appointment, from an attentive and caring #consultant. Also pleased to see two medical students there, learning on the spot. Also impressed at very high level of #mask wearing in #Ninewells Hospital, #Dundee. Thank you #NHS.

“We found a 42.63% higher likelihood of acquiring #autoimmunity for patients who had suffered from #COVID-19. This estimate was similar for common autoimmune diseases, such as Hashimoto thyroiditis, rheumatoid arthritis, or Sjögren syndrome. The highest IRR was observed for #autoimmune disease of the #vasculitis group. Patients with a more severe course of COVID-19 were at a greater risk for incident autoimmune diseases.”

https://www.medrxiv.org/content/10.1101/2023.01.25.23285014v1

Terminally ill MBE winner to receive award in pub. John is a marvel. I’m so grateful to him for all he has done for patients like me with #vasculitis (in my case in my brain, in a very neurological form, since 1994). https://www.bbc.co.uk/news/uk-england-derbyshire-64249378

Related: what are the most common causes of death in patients with #ANCA #Vasculitis?

It’s not the disease. It’s the treatment: https://academic.oup.com/ndt/advance-article/doi/10.1093/ndt/gfac320/6973211?rss=1 - data from the RCTs

Infections

CV death

Malignancy

Patient #preferences for PLEX in #ANCA #vasculitis https://www.kidneymedicinejournal.org/article/S2590-0595(22)00228-X/fulltext

Lots to break down - but

31% would always choose PLEX

17% would never choose PLEX

It’s far from black/white

cns/cerebral #vasculitis is unfortunately typically only discovered post #ischemic events since the inflammation is often in micro vessels and hard to find. i was text book in this regard and thats what it took in 2010 for them to find it and upgrade my dx from cns lupus/ra to the addition of cns vasculitis too.
but #thankfully so far #life has gone on regardless. tho its a strange and challenging thing to live thru. but so #happy to be #alive.
in #2023 i want to hopefully up my #selfcare and diminish my feelings of guilt and unworthiness for my deficits.
#resolution #newyear #illness #happiness #diagnosis #unlucky #lucky #vasculitis #lupus #rhematiodarthritis

cns/cerebral #vasculitis is unfortunately typically only discovered post #ischemic events since the inflammation is often in micro vessels and hard to find. i was text book in this regard and thats what it took in 2010 for them to find it and upgrade my dx from cns lupus/ra to the addition of cns vasculitis too.
but #thankfully so far #life has gone on regardless. tho its a strange and challenging thing to live thru. but so #happy to be #alive.
in #2023 i want to hopefully up my #selfcare and diminish my feelings of guilt and unworthiness for my deficits.
#resolution #newyear #illness #happiness #diagnosis #unlucky #lucky #vasculitis #lupus #rhematiodarthritis

#Introduction

I support Scottish independence: this gives me hope for a better future, back in the EU. #IndyRef2

#Trains, #Trams and #Cycling are the best forms of transport.

I have had #EGPA, a rare form of #vasculitis, for 20+ years.