More Than One Autoimmune Condition
How many autoimmune diseases do you have? In my case, it is three. Since I have type 1 diabetes (T1D), rheumatoid arthritis (RA) and ankylosing spondylitis (AS) it is like the genetic triple bars at the slot machine. I wish each of these were separate and discreet diseases. They are not. They blend together in a stew of inflammation and complications. Controlling one is sometimes detrimental to others.
My first thought is diabetes
In my case, (T1D) is the day to day driver. I manage it every hour of every day, and it acts like a petulant child in need of attention. If I have difficulty moving, sitting, or standing, the first thing I must do is check my blood sugar.
If my blood sugar is neither high or low, then I think about RA and AS. If I have a nasty flare, which is it, AS or RA? Does it matter? A doctor once told me to stop trying to separate these three. I am one person who has a crazy mix of inflammation, so who knows which it is or why.
No magic bullet
My rheumatologist said we have limited options for a person who has significant issues with TNF inhibitors and yet has RA and AS. Translation - there will be no magic bullet.
No rhyme or reason
Inflammation resulting from an autoimmune disease is much like water, it seeps into everything, and it seems to come from everywhere. Then the towel gets placed on it, and it goes away. It happens just that quickly. With little rhyme or reason of what caused it, or why it went away. Of course, I have a pill regimen that attacks inflammation every day, but that regimen never varies, yet the outcome is random.
The Van Morrison song “Into The Mystic”1 has lately been playing in my mind. I feel that when I am confronted with a flare or, I think about treatment options, I am sailing into the mystic. While the song has a few interpretations4, to me, it is about sailing into the unknown and longing for the safety of familiarity. The safety of certain knowledge of what to do and how to make my body better. I am afraid that when a person has more than one autoimmune disease that knowledge about what to do will always be a mystery.
"Multiple autoimmune syndrome"
In 2010 Cojocaru, Cojocaru and Silosi identified “Multiple Autoimmune Syndrome (MAS)” 2 as a person having three or more autoimmune diseases. In that paper, they report that about 25% of people with an autoimmune disease will have two or more and fewer will have three2. The article relies extensively on prior work done by a host of authors including the pioneering work of Humbert and Dupond3 who first attempted to specify different classifications of MAS. As science has advanced, several researchers have tried to further categorize autoimmune disease clusters as individual types of MAS. The majority of authors seem to focus on MAS as a dermatological syndrome. Though some have identified groups associated with RA or diabetes.
I think the take away is that MAS is real, it happens more often than we likely know and it continues to be an evolving science particularly as researchers work to find a common trigger. No wonder when “Into the Mystic”1 is playing I think about autoimmune disease. After all, some days I feel like I am sailing into the wind of the unknown and I can hear that wind blowing.
Do you use the word disability to describe your AS?