Join the Conversation on
3.4K people
0 stories
203 posts
About Vasculitis
Explore Our Newsletters
What's New in Vasculitis

Happy New Year

Ive been living with depression since a young age. Pancreatitis for a decade, and recently was diagnosed with PTSD and a new auto immune disease - vascultis. Eff me right? 😅🤦🏼‍♀️

Just looking to meet like-lifed people who understand chronic illnesses (physical and mental) 🙂 - y’a know, just cause we ‘don’t look sick’ doesn’t mean we aren’t fighting serious battles right?🙋🏼‍♀️

All the best in 2024! Hope to meet some of you soon 😘💁🏼‍♀️

#ChronicIllness #PTSD #Depression #ChronicPain #ChronicPancreatitis #Vasculitis #MentalHealth

34 reactions 10 comments

Polyarteritis Nodosa

Does anyone else have Polyarteritis Nodosa or Vasculitis? I'm waiting on a definite diagnosis from recent blood tests; the ones that have come back are normal but the more indepth ones will take a few weeks and I'm having a full body CT scan this week.

The gp I saw sent a note to Rheumatology and the Service Provider Clinician said: "There are many other more likely causes rather than a Rheumatological one" so I think they want to wait for all the blood test results to come back to confirm for definite."

1 reaction

Dismissive doctors

My name is Leaffouse. I’m 33 years old, living in New England. I am diagnosed with ASD, ADHD, PTSD, OCD, Vasculitis, POTS, MCAS and hyper-mobility. My previous doctors wouldn’t diagnose me with EDS but it’s highly possible. I’m also going through something neurological that is similar to MS or Early Onset Parkinson’s (symptoms of both so they need to do more in depth testing rather than just an MRI) that I need find a diagnosis for but all my tests come back “within range” and imaging I’m told is normal.

My neurologist, come to find out a PA, told me everything is in my head. It’s clearly not. The only doctor in my corner was my primary and we just moved out of state so I need to start all over! I was to be seen at Wake Forest but now I’m stuck starting over, waiting for referrals and praying I get a good doctor. They even misdiagnosed my vasculitis and told me my images were normal.

#Vasculitis #EhlersDanlosSyndrome #Hypermobility #MultipleSclerosis #ParkinsonsDisease

7 reactions 8 comments

I’m new here!

Hi, my name is odderprod. I'm here because I have Lupus and Vasculitis which has put me in End Stage Kidney failure. I had one failed kidney transplant last year. Hoping to hear other people’s stories.

#MightyTogether #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems #ChronicKidneyDisease #Lupus

4 reactions 2 comments

I’m new here!

Hi, my name is Ionna326. I'm here because of systemic problems relating to vasculitis and effects on the heart, mesentery and kidneys.

#MightyTogether #RelapsingPolychondritis #sjogrensvaculitis

5 reactions 2 comments

Need a Rheumatologist that Specialize in Vasculitis

I am sure that I have Vasculitis but

I cant find a Dr to diagnose me or else need months waiting list for appt.

I have Lupus and Sjogrens.

I would go anywhere on the East coast.

Thank you



Scared and sick and tired

That's the word that comes into my mind, when I think about having
several chronic illnesses.
Betrayed by my own body. Having to fight just to do the "normal" things in life like
getting up, taking a shower, going to work etc.
Every time you think you've come to terms with the current status life throws
something new your way.
And there you are… Again standing before the next mountain they expect you to
In my case this mountain is named MPA (Microscopic Polyangiitis)
At the moment it's just a suspicion.
But I'm tired. Tired of getting a new diagnosis every other day. As if EDS, PTBS,
Autism, chronic Migraine blablabla isn't enough.
Tired of them expecting me just to take it. To put on that brave face and keep going
like it doesn't affect me.
Truth is: I am so scared right now.
And I don't know how to go on from here....
#DistractMe #CheckInWithMe #scared #EhlersDanlosSyndrome #Vasculitis

See full photo

Hi guys its been a while!

My auntie shared this with me , I really liked to so I thought I'd share with the Mighty #Vasculitis #Anxiety #ChronicFatigueSyndromeampME #PsoriaticArthritis #Depression

3 reactions 7 comments