Richard’s 1 of 30 in a Million!

We went to the rheumatologist last week because Richard’s vasculitis is still coming and going, despite the fact that he’s on Prednisone. The rheumatologist and the emergency room doctor had the same diagnosis, which we had to look up online. It’s called Hypersensitivity Vasculitis, or Leukocytoclastic Vasculitis (LCV). There’s a 50% chance we’ll never find out what’s causing it but, as soon as Richard gets below 5 mg/day of Prednisone, they’re going to start testing him to see if they can figure out what’s going on. The good news is it’s not affecting his internal organs. It it was, that would be very bad news. So, we’re feeling pretty blessed right now.

He had another outbreak on Monday morning that was a significant one and I got scared. He starts getting burning, itching hives that spread quickly and blend together. If they’re not stopped, blood vessels start bursting under the skin and, if they spread to your mouth, they can close your airway. I think Richard got tired of me repeatedly asking,
“Are you okay? How are you feeling?!”

LCV is very rare, occurring in only 10 to 30 people per million…yet the rheumatologist has seen 5 cases in Bangor in just the past month. He’s consulting with doctors in Boston to try to figure out what’s going on. I think it’s a sensitivity to the sun because Richard seems to have outbreaks after he’s been outside. The doctor said I might be correct but it will take a long time before we find out what’s causing it…if ever.

Needless to say, if you know anyone with this, we’d love to hear from them! Richard is at: richard – at –

I have a Masonism for you this week. Mason turned three in June.

“I have a skeeto bite and it bitches!”

Hugs to all!


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