"Having a rare condition in Swansea"

I was seen by two doctors at Morriston Hospital. One told me that I definitely did not have lupus - the rash was because "I had obviously been out in the sun" - this was impossible, I told him that if I was out in the sun for any period of time I became quite ill and developed a rash.

The pulmonary embolisms and DVTs that I had recovered from were just 'bad luck'. Pleuritic chest pain again 'bad luck'. Arthritis/joint pain? I should lose weight. Fatigue? I needed to get out and exercise more.

I was seen in St Thomas's London. Within 10 minutes I was told that I had Lupus and Antiphospholipid Syndrome (sticky blood) and should start on blood thinners as soon as possible.

One of the doctors in Swansea actually told me that he had doubts that Antiphospholipid Syndrome even existed! Several years on I still have Lupus and Antiphospholipid Syndrome but am being treated with regular visits to St Thomas's.

I have hospitalised many times over the years in Morriston and Singleton, spending many hours over the years explaining to doctors and nurses what Lupus and Antiphospholipid Syndrome are, and how I need to be anticoagulated in a specific way. I have been taken from my bed to the nurses station to phone St Thomas's to get info as to how I should be treated - the local doctors think as I have been going there for years, I have a 'special' relationship with the specialist doctors.