The Autoimmune Registry, Inc. (ARI) provides patients with the opportunity to be a part of the solution when it comes to improving patient outcomes by filling out a simple, free survey. But we are more than just data. Our goal is to be the go-to resource for autoimmune disease.
This is just the second in our new Spotlight series that will eventually highlight every one of the autoimmune diseases in our master list.
Today, the focus is on Antiphospholipid syndrome.
It’s an illness known by many names — one alias after another. The many names that autoimmune diseases go by is a problem – it only adds to the feeling that patients are suffering alone with a rare illness, when in fact, there may be many others they could connect with. This “naming confusion” can also decrease understanding and awareness among the general public.
So how many names does antiphospholipid syndrome have? Let’s see …
Antiphospholipid syndrome is also referred to as anticardiolipin antibody syndrome, aCL syndrome, aPL syndrome, APS, Hughes syndrome and lupus anticoagulant syndrome. But … a rose by any other name will smell as sweet… or something like that, right?
Only, living with APS isn’t so sweet. In fact, it’s pretty complicated and can be life-altering, as many autoimmune conditions are.
Adding to the complexity is that APS doesn’t always go it alone. Patients with lupus and other mixed connective autoimmune disorders often have antiphospholipid syndrome, in addition to their primary diagnosis.
All of the diseases that we focus on here at ARI are autoimmune or autoimmune-related A common feature of autoimmunity is that the body’s immune system attacks healthy tissue.
In the case of APS, the immune system mistakenly attacks proteins in the blood. This can cause coagulation, otherwise known as clotting. This clotting can be dangerous. Luckily, APS is often manageable through proper diagnosis, lifestyle changes, and medications. We’re working to establish the prevalence of APS, but current estimates place it around 144,000 cases in the U.S.
Whew! That’s a lot of info to absorb. Luckily, we will continue to provide resources for you to make it all a bit easier to comprehend — from featured APS bloggers, to patient advocacy groups, to our fact-sheet, and more, we’re here to help you get the info you need about APS.
If you live with antiphospholipid syndrome or are a APS blogger or advocate, we’d love to hear your story. Feel free to email firstname.lastname@example.org if you wish to contribute a guest blog about life with APS. In the meantime, please visit The APS Foundation of America for more information and check out our APS fact sheet, here. And don’t forget to join our free registry, so we can learn more about what life is like for you as an autoimmune patient.