When I was seventeen, I was diagnosed with a medical condition I had never heard of before. I went on a college trip to Cuba in 2007; a once in a lifetime trip. There was an eight-hour flight each way between London and Havana and it was my first ever long-haul flight, although I had flown shorter distances before. I was in a middle seat of an aisle and for the duration I didn’t move around much. I’ve learnt the hard way this is always a really bad idea. I’d felt a bit odd while I was away, but I attributed it to climate changes and jet lag, so I ignored it, but when I got back to England I was feeling rough. It was on a Saturday evening that I was on my laptop and my back started hurting really badly and I ignored it thinking that I’d somehow managed to pull a muscle. (Notice my tendency to ignore things and hope they go away? This is a recurring thing with me. Don’t be like me. I suck.)
After it didn’t go away later and was stopping me sleeping, we rang NHS 111, which is a medical telephone service that you’re advised to use to find out what kind of treatment you need based on your symptoms. After eventually speaking to a doctor over the phone, I was told that it was muscle pain and that it would get better on its own. I couldn’t lie down on my back or shoulders, so I spent the Saturday night sitting on the sofa with my mum watching the QVC shopping channel and Wacky Races cartoons, because I didn’t want to go to A&E on a Saturday night when it’s at its busiest. The next day, wired, I went to a walk-in clinic and the doctor I saw concluded that it was muscle pain, giving me strong painkillers. I took them and fell asleep on the sofa as my back had finally stopped hurting, but soon I woke up with agonising pain in my chest underneath my ribs. At that point, I couldn’t breathe properly or stand up straight and told my parents that I had to go to hospital NOW. We dashed to A&E, where at that point it was really hard to keep from yelling out at the pain. After having some blood tests with weird results, I was kept in overnight. Eventually they told me that I’d had a bilateral pulmonary embolism, which meant absolutely nothing to me. I found out afterwards that it meant I had blood clots in the veins of both my lungs that meant that they were were blocking the blood flow into my lungs. I also found out that if I’d left getting to the hospital later, I probably would’ve died. So, that was a pretty terrifying weekend. I was given the necessary blood-thinning medications to treat the clots, but the doctors were still confused as to why a 17-year-old had rocked up with the same symptoms as an elderly patient.
More unusual blood test results showed that I had antiphospholipid antibodies. As far as my understanding goes, the body has phospholipids, which are part of cell walls, but something unknown triggers the body to think that these phospholipids are foreign and dangerous and so instead it creates antibodies to attack them like it would if you had a virus (hence, anti-phospholipids). If this is untreated it can create problems with the red blood cells (who, understandably, mind being treated as foreign objects in their own body) and it can increase the likelihood that the blood clots unnecessarily. These blood clots can appear in any vein or artery in the body and cause a whole host of problems. These include, but aren’t limited to:
- migraine
- memory loss or ‘brain fog’
- balance, mobility or vision problems
- DVT (Deep Vein Thrombosis)
- miscarriage
- pulmonary embolism (blood clots in the lungs)
- stroke
I then learnt that this condition had a name – Antiphospholipid Syndrome. It’s sometimes known as Hughes Syndrome after Graham Hughes, one of the key doctors who identified the condition back in 1983. It can also be referred to more colloquially as ‘sticky blood syndrome’ or by its initialism, APS (AY-PEE-ESS, not like mobile apps). I prefer to call it APS, so that’s how I’ll refer to it for the rest of this post, and in any posts about the condition that I make here in the future. So, I was told that after six weeks of monitoring and tests, that it was confirmed that I had APS. My first questions I think were the same as most people’s if they were told they had a condition they’d never heard of before.
1) Am I going to die? (I do love the melodrama)
No. Or at least, the condition itself isn’t in itself life-threatening, but if you do have a clotting incident that could be life-threatening. So ehh. Grey area.
2) Is it curable?
Currently, no. It’s a life-long autoimmune condition. More recently there have been people who’ve reported that the antibodies have gone into remission, but there’s no guarentee it wouldn’t come back.
3) Is it treatable?
Yes and no, it’s usually managed with life-long anticoagulation (blood-thinning). For me back in 2007, this was through warfarin tablets and regular blood tests.
4) Is it contagious?
No, APS isn’t contagious and you can’t pass it on to someone else through cuts etc. There’s another grey area with blood transfusions, I don’t think there’s been enough research into that area yet.
At that point I was told that the warfarin tablets I had been taking while I was in hospital I would need to take for the rest of my life, and that to make sure that they were working effectively I would need to go for regular blood tests to monitor the rate my blood clotted and make sure it was in a safe range. There began my lengthy, frustrating relationship with warfarin that I will save for another day.
At that time, I think the most scary and frustrating thing about being diagnosed with APS is that I had never heard of it before, and when I spoke to friends, family or doctors none of them seemed to have heard about it before either. As it’s an invisible illness, no one could tell that I had this condition so it meant that once I was out of hospital there were no immediate signs that would identify me as someone with a chronic condition, so it was difficult for other people to understand when I tried to talk about it. There are a handful of groups doing great work to raise awareness of APS, but the majority of people I speak to in my daily life have never heard of it. I’m hoping in a really small way, this blog can help towards that.
Disclaimer: I am not and have never been a doctor. At best, I have a Science GCSE that I passed begrudgingly back in 2006. I have however lived with this condition for 9+ years.
