I remember this too well. During my flares the dangerous situation called MAS (macrophage Activating Syndrome) occurs.

I’m writing this due to an online friend in an AOSD group I knew who didn’t get treatment in time. I wrote to her sister and told how sorry I was. She was always so kind to me and cheering me on when my stills would go into remission. She would say “ GO Girl! Send us all your healthy vibes!! Wishing you so many years of no flares!” But now I will never hear her cheers again. She was only 42 years old.

What is MAS? When the immune system goes into overdrive, it can lead to a very serious and life-threatening condition called Macrophage Activating Syndrome . This affects about 1 of 3 of people with Still’s disease and is essentially a “system overload.” Instead of protecting you, the immune system becomes dangerously overactive and begins to attack the body’s own organs.
You can usually spot this complication when a person’s fever suddenly gets much worse for no clear reason. Internally, the body is struggling with a swollen liver ( I had liver shutting down but some people get other organ issues) serious issues with the blood. There are specific red flags, like a massive spike in a protein called ferritin, mine was 14,000 and a sharp drop in blood cell counts. Because this can cause organs to fail quickly, it is a medical emergency that requires immediate, high-dose treatment to calm the immune system down. It is a severe life threatening emergency.

Not many people know about this syndrome. In some ways, I’m glad they don’t because this means they have not been experienced it or a someone close to them experience this.

But, today I wish I never knew about it either. RIP Angela fly and soar with the birds you loved so much and fly over the rainbows you wished you could touch and slide down them smiling and laughing.

AOSD sucks.

Stay heathy my friends

Claudine

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