APS – what is that?!

When people ask me what illnesses I have, I see their faces go into a confused state when I get to “Antiphospholipid Syndrome” so I thought, why not write blog post about it? I’ll warn you, this post is about to become a biology lesson. APS is the illness I struggled to get my head around, mainly because I found countless horror stories whilst researching it, so I didn’t want to continue reading about it. For a while, I stopped reading into it because I was convinced that one day it would kill me. However, when you’re facing a life with an illness that can’t be cured you have to bite the bullet and research it no matter how much it terrifies you. 

Antiphospholipid Syndrome (APS) is also known as Hughes Syndrome. It is a disorder of the immune system that causes an increased risk of blood clots. 

This means sufferers of APS are at a bigger risk of developing deep vein thrombosis (DVT) which is self explanatory – a blood clot that develops in the deep veins and it’s usually in the leg. Not only are we at a risk of DVTs but also pulmonary embolisms (PE). A PE is a blockage in the pulmonary artery, the blood vessel that carries blood from the heart to the lungs. The usual cause of the blockage is a blood clot, and it’s usually a DVT that has traveled from your leg to your lung. Pulmonary embolisms can be life threatening because they can prevent blood reaching your lungs. That’s not all about blood clots, after all we are talking about having messed up blood here…we are at risk of a blood clot on the brain, which brings me to a little story: 

My rheumatologist was concerned that my consistent headaches were caused by mini blood clots on my brain that fizzled out on their own. He was debating starting me on Warfarin (anticoagulant) as it would alleviate my headaches. Warfarin is a horrible drug and you don’t mess around with it, and quite frankly I don’t trust myself with it. I told him I’d prefer to see if they improve with time and my current treatment before we try something drastic like that.

To treat a blood clot you will be given anticoagulant, such as warfarin or heparin. If a ‘normal’ person develops a clot they’d typically be on warfarin for around 6 months. If I develop a clot, that’s it, I’m on the warfarin train for life. Once your blood clot is treated, you don’t always walk away with a clean bill of health. Sometimes the clots leave irreversible damage such as lung scaring. Take my father for example, he has APS as his primary illness and has suffered 3 pulmonary embolisms. He has been left with asthmatic type symptoms and uses an inhaler, certain things can trigger him to wheeze and cough. 

In case you thought this illness just caused blood clots, it doesn’t. Sufferers are also at risk of heart attacks, strokes and women are at risk of reoccurring miscarriages. Although with the correct treatment during pregnancy women can have a successful pregnancy, it’s estimated 80% of women following a treatment plan will have a successful pregnancy. Despite that fact, I can’t help but wonder how much heartbreak some women will have gone through before having a successful one. 

I was and still am incredibly lucky to have a great consultant. He is also my fathers consultant so with symptoms, blood results and family history I was diagnosed very quickly. For other people, it’s not straight forward and getting a diagnosis of APS can be a battle, it’s a poorly understood disease and due to its nature of symptoms can be mistaken for multiple sclerosis. The symptoms of APS are also similar to Lupus. I’m going to use my father and I as an example here. Lupus is my primary illness and APS is my secondary illness. APS is my fathers primary illness and Lupus is his secondary illness. However, we show almost identical symptoms. 

There is blood tests designed to show abnormal antiphospholipid antibodies that increase the risk of blood clots. These blood tests are: 

  • Anticardiolipin antibodies (aCL)
  • Lupus anticoagulant (LA)
  • Anti-beta2-glycoprotein-1 (anti-B2GP1)

In order to receive a diagnosis you must have two abnormal blood test results but the tests must have a 12 week gap. 

The treatment I’m currently on is simple, one Aspirin a day to keep the clots away! I hope it stays that way too. This so far has been my hardest blog post to write. I’ve been flicking from website to website to ensure the information I’m giving is correct. Like stated above, this is the one illness that terrifies me. Growing up I’ve seen my dad have horrific nose bleeds, sometimes we’ve even had to put a plastic bag under him to catch the blood that is the consistency of water. I’ve seen the toilet and sink covered in his blood from bleeds, and I’ve seen him in hospital countless times. One time, his INR was so low that the anticoagulants sent his blood the other way (too thin) and he was rushed into hospital with internal bleeding. He battles to keep his INR at a stable level, when his blood is too thick he takes painful heparin injections. That is the reality of APS and why I keep this illness in the back of my mind. I hope I never have to come face to face with it.

Thank you for reading, I hope it gives you more of an understanding of the horrible disease that is Antiphospholipid Syndrome. 

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