The director Harold Remis died recently of "autoimmune inflammatory vasculitis, a rare disease that involves swelling of the blood vessels"

Is this condition related to Hughes Disorder (APS)?

[Salty]

They are both autoimmune but they are different conditions

[Hidden in reply to Salty]

thank you

[CanaryDiamond10]

There is a Vasculitis community on HealthUnlocked. I have both diagnoses and have found the Hughes Syndrome Forum as well as the Vasculitis Forum absolutely irreplaceable in uncountable ways. I highly recommend it.

CanaryDiamond10

[Hidden in reply to CanaryDiamond10]

thank you

[Katniss12 in reply to CanaryDiamond10]

Can I ask what kind of vasculitis you have?

[CanaryDiamond10]

I have central nervous system (CNS) vasculitis. At this moment they suspect it is "awakening" and have placed me on the corner of Wait and See. I had a very rough time the first go around and quite frankly, I don't know that it is worth the arresting processs at my age. The steroids, the disfigurement, the Cytoxan, the bladder cancer I received from the Cytoxan, the unrelenting excruciating pain. Last time it bought me a cerebral stroke, 3 years of treatment, and BANG! a diagnosis of APS, which I am sure I have had all my life. Right now I am watching a rash sounding similar to yours all over my lower legs and spots that are moving. Telling one spot from another on MY face is a challenge, as I was born with freckles which have faded greatly (as I have) during the aging process.

Luisa, always feel free to ask me anything you like about either disease. But I'm a truth teller. It's the way I like it so it's the way I give it to other people. To me, there is not much use in buffing things over. They are what they are. I am only worth my experience, which I will gladly share.

Warm wishes,

Canary

[MaryF Administrator in reply to CanaryDiamond10]

Good to hear that the other forum is coming up trumps! MaryF