I have been a member of the Hughes Syndrome Foundation since I was first diagnosed with Hughes Syndrome and do consider myself one of the lucky ones, not to mention the lovely Hughes Syndrome Family I've met along the way, whilst latterly I've been a bit hopeless at keeping in touch (possibly because I currently feel so well!) anyway I digress!
I was first diagnosed when I was about 24 following a routine blood test at St Thomas's having been referred there by my GP as I lived locally at the time, I was tired all the time, bruised like a banana and they thought it might be glandular fever or similar but whilst at St Thomas's they tested for APS and it came back positive. I was then referred to Prof. Beverley Hunt's Haemotology Clinic where I was given a booklet and told to read the information, and to come back in 6 months time to be monitored but at that stage that was it, I was advised to stop smoking and come off the pill, both of which I did immediately! As I recall I didn't really have any further symptons for a while and didn't give it too much thought.....then it changed! I flew on holiday to the US and returned to the UK a few days later, I then had a headache/headaches that were like nothing on earth and was going back and forth to my GP to get various pain medication to help the headache (which did eventually go), as my company had private medical cover I was referred to see a neurologist and when there insisted on an MRI scan, the chap I saw was somewhat dismissive and said that it was probably all in my head! However he did have to eat his words as the scans showed evidence of a couple of TIA's (they were unable to tell when they'd happened but almost certainly around the time of the headaches!).
I was then referred back to Prof. Hunt ahead of any planned check up and was immediately put on Warfarin but due to having APS for the next c10 years I was going to the Anticoagulation Clinic for INR blood tests on a weekly basis, in addition I had a self-testing machine but due to the way my NHS trust works they won't accept the results. When my INR levels dropped I was advised to take a booster dose of clexane as well. I stayed like this for some time but had a couple of occasions when I forgot things with ease (more so than just on an average day) and was referred for further mental ability tests which showed that my memory wasn't tip top but certainly was above average so that was somewhat knocked on the head.
A few years ago I also began to suffer from joint pain and as many of the foundation who know me will be aware was an avid runner, but this has declined a little latterly, I also have underlying Lupus and take plaquinel to help which has been a god-send.
During the past couple of years, I got married and naturally my husband and I wanted to start a family but we were increasingly aware that this might prove hard (plus knowing that if there was going to be an APS flair it could be cerebrally and not necessarily a risk we were prepared for), however following 4 years of trying and no pregnancy the conclusion was reached that perhaps due to my age (37) and my APS it wasn't necessarily going to be! We began to look at alternatives and then rather surprisingly/shockingly I fell pregnant, I was then switched to Clexane and all went well for the first 5 weeks but regretably I had a delayed miscarriage and unlike most people I am not prepared to keep trying for a further 4 years to be disappointed again, however the shining light as far as my APS is concerned is that they decided to keep me on Clexane (80mg daily) and I've never felt so well, Warfarin and I always had a battle to maintain my INR levels and keep on an even keel.
I am one of these people who is willing to give things a go and try things out to see how they help my health, an area I have looked into is diet and how that helps the disorder but for many who know me they know my cupcake baking gets in the way!
I hope this gives you an insight into my experience and hope that it starts conversations and blogs going!