Antiphospholipid Antibody Syndrome
Antiphospholipid antibody syndrome is one of those tongue twister disorders. One that you would probably not ever hear about unless you have it or know someone who does. It's also referred to as APS, APLS, or APLA. Those abbreviations are a whole lot easier to say, don't you think? I do - maybe I'll just stick with them.
This condition is also sometimes referred to as Hughes syndrome. This is because of Dr. Graham Hughes, the rheumatologist, who works at the Louise Coote Lupus Unit as Saint Thomas' Hospital in London. (To read more about the original APS Support page, click here – opens a new window).
APS is basically an autoimmune condition which produces antibodies that fight against phospholipid or aPL, which is a normal cell membrane substance. It sees them as foreign substances. The syndrome can cause blood clots in the arteries and veins. These can lead to heart attacks and strokes as well as complications during pregnancy.
Antiphospholipid Antibody Syndrome or...
Many times antiphospholipid antibody syndrome happens in people who already have other autoimmune diseases like lupus. In these cases it is referred to as secondary antiphospholipid syndrome. It can also develop in healthy people when no other condition is present. In those cases, it's called primary antiphospholipid syndrome.
Another term sometimes used to describe APS is “Sticky Blood”. Kay Thackray wrote a book - Sticky Blood Explained - in which she talks about her personal experience with APS. Reading her book, as well as the following one, will help you learn more about this condition. Dr. Hughes also wrote a book - Understanding Hughes Syndrome: Case Studies for Patients - It includes 50 case studies that will help you figure out whether or not you have it.
Dr. Hughes Blog
Dr. Hughes has a blog you can read through to learn more about the syndrome and other related conditions. Another very helpful website is APS Foundation of America (opens a new window). If you're interested, they are good places to start.
APS is commonly misdiagnosed as multiple sclerosis. That is why a neurologist or rheumatologist can help you determine if you have either of these or some other autoimmune disease. If you aren't satisfied with the answers you get, seek a second opinion. Be proactive until you are satisfied.
Unfortunately, when you have developed one autoimmune disease, you may be more susceptible to developing another one such as lupus. And often times one person may have several. My brother also has Graves Disease, an immune system disorder that causes your body to overproduce thyroid hormones (hyperthyroidism).
Antiphospholipid antibody syndrome video
Here is a video where Dr Hughes explains sticky blood syndrome or APS. Sometimes it's easier to understand something when you can see it or hear it, at least from me it is.
He even has a YouTube channel with a few videos you might find interesting.
As MSers, we can sometimes attribute every new symptom or problem with our multiple sclerosis when it might not be the case. When Cir goes to the doctor they usually ask if he's had any new symptoms. It's best to discuss anything new with your GP or neurologist so as to rule out the possibility of another condition.
It's so easy to just say, "oh, that's just my MS". We may be allowing a condition to get progressively worse, when there is a treatment available. Cir is very good at communicating with his health care team about what's going on with him. Whether it's a new symptom (which rarely is the case), or recurring symptoms that pop up every so often.
Whatever the case, when managing any autoimmune disease, communication is the key to staying on top of it, and getting the treatment you need to keep it under control. I'm sure, as an MSer, you tend to listen to your body and pay attention to what's happening on a daily basis. Just make it a habit to share this with your doctor at each appointment.
Some APS Statistics
The APS Foundation website shares the following statistics about the condition as well.
- Number 1 cause of stroke in young people.
- 20% of all cases of blood clots in large veins (deep vein thrombosis), including blood clots that go to the lungs (pulmonary embolism) are due to APS.
- 1 out of 5 women with recurrent miscarriages have APS.
- One third of strokes occurring in younger people (under the age of 50) are due to APS.
- APS is a major women’s health issue: 75-90% of those affected by APS are women.
- 40-50% of patients with lupus also have APS.
- Antiphospholipid Syndrome affects nine women for every man.
- Estimated, as of 2019, to affect 1 in 2000 Americans.
Similar symptoms
According to the website APS Foundation of America, besides the major symptoms that can cause "blood clots, including heart attacks and strokes, and miscarriages", there are:
Other (symptoms) that might be associated with antiphospholipid antibodies include:
- Problems with thinking clearly (loss of concentration, difficulty with reading comprehension and performing calculations, memory loss)
- Neurological problems similar to multiple sclerosis.
- Migraine headaches, sometimes with visual disturbances
- Other neurological symptoms including episodes of partial or total vision loss, dizziness, vertigo, loss of balance, seizures, and other abnormal movements
Don't discount any symptoms you have, even if they are similar to what you experience with MS. As we said before, share them with your doctor. At least they can rule out the possibility of APS or some other disorder, or let you know that yes, it is indeed "just your MS".
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