"You're suffering from APS? What is that? Never heard of it!"

If you suffer from APS and you've mentioned it to your employer, friend or family for the first time, you will have heard the aforementioned response once too often - usually accompanied by a blank or even suspicious stare. If you haven't ever heard of APS, and there's a rather high probability that's the case, then here's a chronicle of what APS is and how it has affected my life personally.

APS stands for 'Antiphospholipid Syndrome' or 'Antiphospholipid Antibody Syndrome'. It is an Autoimmune Disease also known as 'Hughes Syndrome' a condition that is created primarily when your body begins to create antibodies against your 'phospholipids'. Simply put, this results among other things in your blood developing the propensity to clot at the slightest provocation - leading to Deep Vein Thrombosis (DVT), miscarriages and even strokes, all of which can be fatal. Often, most sufferers have no idea that they have APS until they suffer one of the major symptoms mentioned above. Oh, and APS is unfortunately quite incurable.

 

I found out the hard way back in December 1999, when I suffered a 'Cerebrovascular Event' while driving home from work. Without warning my left arm from the shoulder down literally died on me. It flopped down by my side and refused to budge when called upon to operate the gear stick. I also lost all feeling in it at that moment. I didn't know what had happened to me, but I do recall being quite confused. Somehow, I got the car home safely driving with just my right arm. I do recall touching my left arm with my right hand - it felt cold and foreign, like it wasn't a part of me! I went straight to bed and astoundingly, nobody bothered to call an ambulance on my behalf, or rush me to a Hospital. I took public transport to work the next day and noticed that my left leg wasn't cooperating when I was walking. In fact, it was several days before I saw a GP and somehow, the opportunity was missed to get me into a Hospital immediately. Ultimately, my left arm began to function again after a few days but I had lost a lot of feeling in my hand and fingers in particular. It was as if I had been given a permanent local anaesthetic in that part of my body. Shortly afterwards, I noticed that my left foot began to swell up. An X-ray of my ankle revealed nothing. Unknown to me, I had also developed a DVT in my left thigh.

Though these symptoms persisted, it wasn't until I was referred to Dr Colaco and he immediately recognised the symptoms, that I was hastily referred to Dr Greenstein, a Cardiovascular Surgeon for treatment.

Doctor Colaco was also responsible for resolving the mystery of my 'Cerebrovascular Event' that had led to my loss of sensation on the left side of my body. He also duly referred me to the Haematology Clinic, where it was determined that I had APS. I was quickly prescribed Warfarin, and will have to remain on it for the rest of my life.

 

The truth is my hitherto normal life began to fall apart as soon as I had the CVE in December 1999. I didn't even know what a stroke was, otherwise I would have gone to A&E immediately. I tried to get on with my life, not even realising that I had a potentially fatal DVT in my thigh - it was two and a half years before it was discovered and promptly treated, but that wasn't the fault of the good Doctors at CMH.

By this time, the other symptoms of APS had begun to manifest themselves. My entire body was in constant pain. My muscles and joints were constantly hurting. I felt absolutely awful and there were moments when I thought I was going to drop dead soon. The truth is that by then, APS had resulted in my developing PAD - Peripheral Artery Disease - something which I still suffer from in varying degrees today. I was also having dizzy spells and mini blackouts. Unknown to me, I had also developed blockages in the Carotid Arteries in my neck - a condition called 'Carotid Artery Stenosis'. That, coupled with the thickening of my blood resulted in the dizzyness and the mini blackouts. Before I was told that I had APS, I was sure I must have a terminal disease, and that my days were numbered. I was miserable, depressed, unable to fuction as a normal human being and never had the energy to do anything I wanted to.

 

Today, I am still having to live with and manage APS. It is not easy. Having a strong APS flare often means missing work for a day or two, because I am in so much pain, it is impossible to function. I no longer have the strength I used to have, and usually run out of energy shortly after midday. I am still holding down a full time job at the moment, despite this being incredibly difficult for me, but I do try to keep going. Thankfully, an Occupational Health review at work acknowledged my APS under existing DDA regulations, and the company I work for have made adjustments to help me stay employed.

However, I still live in constant pain from day to day (and night too). I continue to have blood circulation problems, occasionally something called 'Brain Fog' which leaves you with a brain that seems to be running at 50% of normal capacity, and a whole range of SLE (Systemic Lupus Erythematosus) like symptoms which are equally unpleasant. I literally ration my energy everyday. By 5pm in the evening, I am in so much pain, I have to lie down to relieve it. I don't go out in the evenings. I rarely go out on weekends. I don't risk flying anywhere on holiday because of the DVT risk. In fact, I haven't been on Holiday since 2006 when I went to Paris for my wedding anniversary and fell ill while I was there! I regularly suffer from Transient Ischaemic Attacks (TIA's) or mini strokes, though these have lessened with adjustments to my Warfarin dosage.

 

The greatest problem with APS is that a lot of people have never heard of it. It also falls under the classification of 'Invisible Illness". Why invisible? Because externally, sufferers seem to be perfectly fine. There are no externally visible symptoms to suggest that they are suffering from anything at all. And when they do complain about what they are suffering from, there is a tendency for employers, friends and even family to believe that they are simply malingering or just seeking attention or undue sympathy. In my case, having been blessed with good genes that result in me looking ten years younger than I really am (on a good day obviously - hahaha!), it makes it all the more difficult for anyone to believe that I am suffering from an often debilitating autoimmune disease.

But guess what? I am one of the lucky ones suffering from this disease. APS causes miscarriages in pregnant women. APS can be fatal. In the worst case scenario, it can develop into CAPS - Catastrophic Antiphospholipid Syndrome - this happens when vital organs in the body are attacked by errant antibodies and simultaneously suffer catastrophic failure, leading to death. There are people who suffer so badly from APS, that they can't work or function normally. I hope APS is officially classed as a form of disability in its worst form. However, a lot of sufferers go to great lengths to try and live a normal life. I do believe that by acknowledging the limitations imposed by the disease and making lifestyle adjustments, it is possible for some sufferers to still live a relatively good life. It might be incurable, but it's certainly managable. The important thing is to never give up on yourself, and educate those who have never heard of APS as to how potent it can really be.

 

I am Tony Akingbule and I suffer from APS. I am 51 years old.