As many as 15% of Americans have a blood disorder (called anti-phospholipid antibody syndrome - APS) that can increase their risk for blood clots and stroke. While these antibodies are especially common in people with certain auto-immune diseases like SLE (systemic lupus erethematosis – or “lupus”) quite a few people have them without ever knowing it. In fact, most people with APS remain asymptomatic their entire lives – but for an unlucky few, the disorder can cause devastating consequences.
I interviewed Rebecca Sherman about her recent stroke caused by APS. Listen to the podcast here.
Dr. Val: Tell me about the events leading up to your stroke.
Sherman: I was a young, healthy 32-year-old with no idea that I had anti-phospholipid antibodies in my blood. One morning when I was washing my face at my boyfriend’s house I suddenly noticed that one side of it was frozen. I was standing in front of the bathroom sink and I fell to the floor with the washcloth in my hand. I couldn’t walk or talk – the whole right side of my body didn’t do what I wanted it to do. So I threw the washcloth at my boyfriend’s head (with my left hand). Luckily my aim was good (he was asleep in bed) and the bed was near the door to the bathroom - the cold, wet object caused him to jump out of bed and find me.
My boyfriend figured that he’d get me to the hospital faster (we live in New York City) if he hailed a cab rather than calling 911 and waiting for an ambulance to arrive. The problem with this approach is that when we arrived at the Emergency Department the triage staff expected me to explain what was going on and to fill out a registration form (since I was technically a “walk in” which is assumed to be less acute). Of course I couldn’t do either – so after talking to a brick wall for a few minutes they asked my boyfriend to explain what was going on. They then realized I was having a stroke and I was immediately given blood thinner treatment.
Dr. Val: What was your recovery like?
Sherman: I was in the hospital for 2 weeks, and during that time my brain was very sensitive to external stimuli. For example I couldn’t have the TV on in the background when the doctor came to talk to me. I had a pretty severe aphasia – I could only say three words: “hotel,” “hospital,” and “house.” At the time, I thought I was having full conversations with people but those were the only actual words coming out of my mouth. I have no idea why I could only say “h” words.
I did receive lots of therapy, including speech, occupational, and physical therapy. I went to the hospital every other day during my outpatient recovery period.
However, it took me a long time to get back to my usual “multi-tasking queen” self.
Dr. Val: Do you have any residual deficits?
Sherman: Absolutely, I still have slight weakness on my right-hand side, and it makes me kind of clumsy. Also if I’m sick, nervous, or tired I have word-finding difficulties.
Dr. Val: Pregnancy puts people with APS at a higher risk of stroke. What was it like to get pregnant? Were you anxious? How did you handle the pregnancy?
Sherman: Getting pregnant was especially difficult for me because (in addition to the APS) I have polycystic ovary disease. Luckily I didn’t have to undergo hormonal treatment to get pregnant because that would have put me at much higher risk for another stroke. I found out I was pregnant on Christmas eve, and my hematologist prescribed low molecular weight heparin (Lovenox) injections right away. I injected myself with it once a day for almost 9 months. The last two weeks of my pregnancy I was switched from Lovenox to heparin injections twice a day. Then I used a tapered dose of Lovenox for 6 weeks post-partum, and then I went back on baby aspirin for my APS. I’ll take one aspirin a day now for the rest of my life.
Dr. Val: What do you do differently now that you’ve been diagnosed with anti-phosopholipid antibody syndrome?
Sherman: Well, I see my hematologist every six months to a year. While most people probably don’t see their dentist as often as I see my hematologist, it’s an important part of my life now because I want to stay as healthy as I can. I take a baby aspirin every day, I eat nutritious foods and I go to the gym regularly. Of course, I’m much better at taking the aspirin than going to the gym and eating right.
Dr. Val: What advice do you have for others with this syndrome?
Sherman: Once you find out you have it, there’s a lot that you can learn about APS. I strongly recommend that people with APS go to the American Society of Hematology website. There’s so much to learn about our blood – it’s an often-overlooked feature of good health.
To listen to Rebecca tell me her story, please check out the podcast.