Shoot! I sure am thankful for God's grace and for anyone still reading this little blog project of mine (related side note: "hi, Mom! and thanks for always reading … love you!) :)
Anywho….. I'm getting to this post (finally) because so many wonderful friends on Facebook have been praying for me and asking for updates. I finally absorbed into my thick skull over the weekend that it would be so much easier to write this post than to keep apologizing for not sharing more info.
(Related side note : THANK YOU to everyone who continues to lift me up in your prayers and send encouraging notes, cards and Bible verses. I appreciate them so much more than I can ever express - on this blog or in person!)
(2nd related side note : I am SORRY to everyone who continues to life me up in your prayers, in spite of my complete and almost total lack of ability to keep you all properly updated on what's going on. All I can do is ask for your forgiveness and continue to refer you back to related side note #1. I know having a blog is a great way to actually, you know, keep everyone updated and I'm trying my absolute hardest to get recommitted to that idea!)
If you've tuned in the last couple of years, you know I've been struggling mightily with a bunch of unrelated health problems that finally brought me to a diagnosis earlier this year. Before we left the Netherlands in April, I was diagnosed with antiphospholipid antibody syndrome, a relatively rare autoimmune disorder (I can't stand the word "disease" … it fills me with so much dis-ease… hahaha, get it?).
Although the diagnosis wasn't a fun one, it brought a lot of relief to finally realize that someone "out there" knew enough about what I was experiencing to actually give it a name. Because once you can name it, you can effectively treat it.
So what is "antiphospholipid syndrome?" I know you're positively on the edge of your seat and just can't wait to know. Ok, so many that's a bit of an exaggeration, but, because autoimmune issues are on the rise, you might be confronted with it someday, or know someone who might be, and I'd love to help get the facts out there about this disorder.
Antiphospholipid syndrome (APLS) is just one of more than 80 disorders that involve the body turning on itself in some way. Rheumatoid arthritis and multiple sclerosis are perhaps the most well-known autoimmune issues, along with lupus.
APLS is technically "when your immune system mistakenly attacks some of the normal proteins in your blood" (thanks to Mayo Clinic for the definition). In plain English, that means that, when someone has APLS, their immune system turns on and attacks the blood.
APLS "clinical symptoms" (symptoms doctors ask you to describe while you're in their offices) vary, but usually include:
- Blood clots
- Stroke-like symptoms (or actual strokes, some cases)
- Migraine-like headaches
- Sudden bleeding
- Frequent and recurrent miscarriage
- Neurological problems that present similar to multiple sclerosis (MS)
Getting to an APLS diagnosis is tricky and almost always takes some time (as it did in my case, which was further complicated by the fact that the process started for me in the Netherlands, where I faced cultural and language barriers during my appointments!). After listening for clinical symptoms, doctors typically order a bunch of blood tests, including:
- Anticardiolipin antibodies (IgG, IgM, and IgA)
- Lupus anticoagulant
- Antibodies to b2-glycoprotein I (IgG, IgM, IgA)
It's only after the blood tests and clinical symptoms match that you get a working diagnosis of APLS.
Treatment for APLS typically involves some kind of a blood thinner (I'm on baby aspirin every day) and an ongoing relationship with a good medical team as symptoms come up. Typically, APLS heroes (I like hero better than patient) work with their primary care doctor to treat non-urgent symptoms and a rheumatologist to treat the ongoing underlying APLS disorder.
Additionally, as in my case, a growing number of folks with autoimmune disorders are choosing to work toward complete and total recovery with functional medicine doctors, many of whom believe autoimmunity can be addresses by identifying and treating underlying causes of inflammation. This deserves a separate post - and I will post one! Promise promise!
There ya have it …. all the basics. So if you're following me on Facebook, you now have way more info than I ever could've shared in a few short status updates.
If you've recently received an autoimmune diagnosis, or are supporting someone with their own diagnosis, I'd love to talk with you and/or pray for you! Please click here to send me a message and get in touch.
Links used for APLS research (that all point to good info):
Links used for autoimmune research:
If you're ready to read beyond the links, I've read and recommend:
The Immune System Recovery Plan
Women and Autoimmune Disease
The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance - and the Cutting-Edge Science that Promises Hope
**The above links are affiliate links, meaning I get a small (very small….) "commission" from Amazon if you purchase them. I add any $$$ I make from these links to the fundraising work we do as a family for organizations like Zambikes, WorldVision and Unbound.**