June 15th - Eve - Zoom - Antiphospholipid Syndrome awareness
Mon 15th June 2020 at 19.30 - 21.00
A talk by Rotarian Phil Godfrey. Phil is an Ambassador for APS Support UK, which promotes awareness into Antiphospholipid Syndrome.
I am an Ambassador for APS Support UK, and have spent 2018/19, travelling around the British Isles, and spoken at some 107 Rotary & Inner Wheel Clubs, in order to spread awareness of APS (Antiphospholipid Syndrome)
I attach a map of my initial route, and the Rotary General Council Paper (Feb 2018) where approval was given to this initiative; which gives the full story.
Antiphospholipid syndrome (APS) is an incurable life-threatening autoimmune condition that causes the blood to clot too quickly in veins, arteries and the brain. It can cause potentially fatal events such as strokes, heart attacks, blood clots on the lungs (pulmonary embolism – PEs) and deep vein thrombosis (DVTs).
In pregnancy, APS is the most important treatable cause of recurrent miscarriage and a woman is five times more likely to suffer a stillbirth; it is also associated with other complications such as infertility, pre-eclampsia, low-weight babies and premature births.
As a national charity, APS Support UK aims to achieve earlier diagnosis and to offer support to anyone affected by APS through increased awareness, education and research.
My late wife Christine suffered from APS for 40 years and I am trying to raise the profile and awareness of the disease by raising funds to make GPs more aware of the condition through Continuing Professional Development online training. A recent patient survey indicated that 37% of GP’s are not even aware of APS. Early diagnosis is critical to the successful treatment of APS and, as GPs are on the front-line of primary care, the process of educating GPs is crucial.
The money raised so far is now £101,000 and part of this has been used to fund the first ever Royal College of GPs eLearning Training Course to help GPs have a greater understanding of the syndrome.
The major part of the money raised, together with donations being raised now will go into a much-need APS research fund that will be managed by world-renowned APS professors.
I had originally planned to walk from Scilly Isles to the Shetlands; however, after 350 miles, I unfortunately seriously damaged my knee and I shall be unable to complete the walk.
My revised plan is to carry out a ‘Round Britain Rail Trip’ in stages and talk to as many Rotary and Inner Wheel Clubs as possible. The cost of my rail journeys is already covered separately. I plan to start in the near future and, in the meantime, I shall be happy to talk to any Rotary and Inner Wheel Clubs.