In January 2025 I was diagnosed with a DVT in my right calf. I had been really poorly with a flu type illness between Christmas and New Year which affected my chest and asthma. Back at work after the Christmas break I was still coughing and my leg started hurting/aching. I left it thinking I had just pulled a muscle. After a few days I thought I needed to see the GP again as my chest was getting worse again and my leg still ached. Luckily my GP advised me to go to the Emergency Dept. Bloods were taken and surprisingly to everyone they came back with a raised d-dimer which can be a sign of a DVT. I was sent home on blood thinners and arranged a scan for a couple of days time. Everyone thought it was still highly unlikely to be a DVT and were more worried about my chest. USS was going well until the sonography went quiet and there it was a small DVT in my calf. Completely shocked back to the haematology nurses and blood thinners for 3 months. CT of my chest was fortunately clear and no sign of a PE.

I was in shock and worried about every little thing. They still weren’t sure what had caused my DVT but thought it may have been due to my chest infection but I was still mobile. I had that niggling feeling that I just couldn’t get rid of and really advocated for myself to have further testing as it may have been unprovoked. I luckily had appointments with some great drs that pointed me in the right directions. Anti phospholipid syndrome had been mentioned but it was rare and again told unlikely. The more I looked into the syndrome the more boxes I ticked. The more I read the more I worried. Blood tests were eventually taken and came back positive for one out of the three antibodies. Plan was to come off the blood thinners and re check in 12 weeks as per standard protocol. I was told my lupus anticoagulant was weakly positive and so most likely due to my recent illness. One hospital didn’t even check it. 12 weeks later bloods taken and I had convinced myself it would be all clear. The dr was phoning me about the result. Surely they wouldn’t tell me I was positive over the phone!?

Unfortunately the highly unlikely was reality. My lupus anticoagulant was still positive so I was diagnosed with anti phospholipid syndrome with a single positive. Blood thinners were recommenced immediately and needed to be taken for life. I was on a steep learning curve about a condition I had never heard of.

Anti Phospholipid Syndrome is an auto immune disease that makes your blood sticky and more prone to clot. Putting those with the syndrome at a higher chance of strokes, heart attacks, pulmonary embolisms and DVTs. Blood thinners can help but for some they aren’t always effective. Lots of things can trigger blood clots including infection, trauma etc. Like all auto immune conditions there are a variety of symptoms alongside the increased risk of blood clots. Including migraine, fatigue, aching joints to name a few.

I am slowly getting used to my new normal and learning more all the time. I now have a great team of specialists around me. I consider myself extremely luckily that my clotting event was a DVT in my lower leg so lower risk than other clots. I was also investigated and diagnosed after my first clotting event and at least I know. Many are diagnosed after several clotting events, and life threatening clots. Others have a type only active during pregnancy and have to endure multiple miscarriages and heart ache. I count myself lucky everyday that I had a successful pregnancy and I’m immensely proud to be Harrison’s mum.

Thank you so much if you managed to get to the end! I now want to raise money for the APS Support UK who I have accessed a wealth of knowledge from. Without charity money they can’t continue to support people like me. As it is a rare disorder many health care staff haven’t even heard of the syndrome. Treatments are minimal and based around blood thinners and some rheumatology medications. Blood thinners also come with there risks. More information and awareness is needed by healthcare staff and the public, hopefully this donation will help. APS Support UK also help fund vital research and PhDs looking into APS.

I’m still getting used to my new normal and finding an anti inflammatory diet and regular exercise is helping. I aim to walk 100 miles in January which might not sound much but auto immune conditions are often worse in the winter so I want to focus on something and make a positive impact. Any donation is greatly appreciated.

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