APS Support UK News

Four APS organisations joined forces to raise awareness of antiphospholipid syndrome for World Thrombosis Day 13th October 2018. Together with APS-ACTION, the APS Foundation of America and the APS Foundation of Australia we ran a collaborative campaign to increase awareness of APS in the thrombosis community and beyond. To read more about the APS campaign, please read our World Thrombosis Day leaflet. During the campaign we asked that patients write in with questions that would be answered by members of APS-ACTION. You can read this patient questions and answers here . Thank you so much to everyone who contributed to the # WTDay18 APS Support Campaign.

If you are an APS patient who regularly takes hydroxychloroquine (trade names Plaquenil and Quinoric in the UK), please be aware that the Royal College of Ophthalmologists (RCO) have updated their guidelines regarding eye testing.  This is because recent studies have shown that hydroxychloroquine retinopathy is more common than previously reported – around 7 in every 100 patients - especially with long-term use over five years or heavy doses. The risk is much higher in patients who have been taking the drug for 20 years or more: in these patients, between 20-50 out of 100 will develop retinopathy.  This type of retinopathy, also known as ‘bull’s eye maculopathy’, damages the retina and symptoms can include partial colour-blindness, loss of fine detail, blurring or distortion, night blindness and permanent central vision loss.  Therefore, the RCO now recommends that all patients who take hydroxychloroquine for longer than five years should be referred by their GP, or...

The product of a collaborative project between the Hospital for Special Surgery, New York, NY, USA and Nancy-Lorraine University, Nancy, France. The authors - Laurent Phialy, Stephane Zuily and Doruk Erkan - developed this digital book with the main aim of helping medical students better understand the spectrum of antiphospholipid antibody (aPL)-related clinical problems, and to help educate them in the diagnosis and management of APS. However, the APS iBook is proving popular with the medical community and patients alike, with one reviewer stating: "a must read for patients and doctors. It's written in a clear and understandable and the international cooperation gives us all hope". The APS iBook has won two awards : Best iBook of the Year, Education Category, Science Subcategory and One of the Three Best iBooks of the Year, All Categories. Definitely worth a read! Please click here to download your copy. Note: This iBook is free to download with iBooks on your Mac or...

Thanks to the efforts of our fundraising committee, the Louise Gergel Fellowship , and matching funding from LUPUS UK the charity has been able to support a year-long APS research project at University College London (UCL) carried out by Dr Vera Ripoll-Nunez.   Dr Ripoll-Nunez started her career in Colombia working at the Institute of Immunology, focussing on malaria which is the leading cause of death in Colombia. During this time, she developed a passion to forge a career in immunology and worked in Australia and the UK.   She has been working at UCL since 2011, and played a key role in the 2010-2016 research programme funded by Arthritis Research UK that looked into the causes of APS.   Her new project builds on this earlier research and will look at a new biological target in the treatment of APS: an important process called autophagy in which the body’s cells renew themselves.   Dr Ripoll-Nunez is aiming to prove that a malfunction in autophagy ...