Early diagnosis saves lives
In 2010 I had my first miscarriage I thought it was my fault. I was 25, just married and hadn't been eating the best, was drinking most weekends and had a busy life, so I buried all my feelings of guilt and hurt, put on a smile and got on with life.
In December 2014 I fell pregnant again and we were overjoyed. But, unfortunately, our happiness turned to sorrow when on Boxing Day, at ten weeks pregnant, it was confirmed I had lost our baby. The hurt was unbearable and the guilt terrible. I felt I had let my husband down and was a failure and not worthy to be a mum.
I had two early miscarriages in 2008 after trying for a baby for over a year. One was in May and one in September at around seven weeks. I was under the care of fertility doctors, as I had also been diagnosed with polycystic ovaries. I had been on fertility drugs during the time I had the miscarriages, and continued to take them afterwards to aid my fertility.
Unfortunately, one year later and I had had no further pregnancies. I know it is an awful thing to say, but I was desperate to get pregnant again so I would lose the baby and then I could get referred for more tests but was also terrified of being pregnant again in case I lost it, if that makes any sense?
My name is Edward Mackay, Eddie. In 2004 I turned thirty years of age. I was a fit and healthy non-drinker/non-smoker who worked for the local wildlife trust. In December of that year I was bedridden and diagnosed with flu. I don't remember much of this as the fatigue, the worst limb pain I had ever experienced and the difficulty concentrating because of the headaches makes this period a bit hazy for me. After about a week I was back on my feet but on the evening of 27th January 2005, over the course of one and a half hours, my left leg went from being a bit sore to landing me in A&E with a full leg DVT.
I was rushed into St Thomas’ Hospital in London with suspected meningitis in November 2002 and discharged five days later with high dose pain relief. I was twenty years old and had to take time off from my university course as I simply could not function.
My symptoms were classic of meningitis with extreme photophobia, a very stiff neck, big rash and I honestly thought my head was going to explode!
I am a 62 year old female and am a paediatric physiotherapist by profession and, up until my late 40s, was very active and fit.
About fifteen years ago I had an incident with a screamingly bad headache in the night. I took pain killers and went back to sleep. The next morning I felt strange on my right side, but my husband said I looked fine. I went to work, but my balance and coordination were poor.
I’d always been lead to believe that I wouldn’t be able to conceive, as I have Polycystic Ovary Syndrome. My husband and I had been together ten years, and we’d always assumed we wouldn’t be able to start a family of our own. However, after returning from Australia to visit our new nephew, we decided we’d like to try for a family, and planned to see a fertility specialist; so it came as a great and welcome surprise that I suddenly fell pregnant in January 2014, without any intervention.
I was an extremely fit and active 18 year old when I was admitted to hospital with a suspected pulmonary embolism (PE). After a week on heparin injections I was sent home, being told that the symptoms were inconclusive and it was probably pleurisy. I was given some painkillers and no further tests were run. I was keen to get on with my A-levels and so didn't ask any more questions.
My medical history at this point showed I had suffered badly from Glandular Fever at 13, I had been diagnosed with Reynaud's and had a history of skin rashes in hot weather but these things were not looked in to.
I received confirmation of my diagnosis of Hughes Syndrome (antiphospholipid syndrome) at St Thomas' Hospital on 21st April 2005. I was 52 years old.
I had never been someone who suffered from headaches but I had had a couple of migraine type attacks through each of my two pregnancies in the 1980s and subsequently once or twice a year after that.
In 1983, aged 50, I suffered one of these attacks at work resulting in a severe headache, photophobia, flashing lights, fragmented vision, impaired memory, inability to process actions and failure to recognise my colleagues.
One of our charity’s main aims is to raise awareness of APS - both amongst healthcare workers and the general public.
© 2017 APS Support UK (trading name of the Hughes Syndrome Foundation). Registered Charity Number 1138116. A company limited by guarantee registered in England 7268671.