Tuesday, 16 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.
Tuesday, 8 May 2018
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 APS specialist, for a yearly test at a hospital eye clinic.
The screening will be comprehensive and your pupils will be dilated with eye drops – for the technical information involved, please read the RCO’s guidelines:
There is also a very useful leaflet produced by the Macular Society that you may find helpful:
Sunday, 29 April 2018
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 iOS device (multi-touch books can be read with iBooks on your Mac or iOS device). iBooks on your Mac requires OS X 10.9 or later.
Friday, 9 February 2018
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 leads the immune system to attack the body itself causing symptoms of APS, and she has already obtained promising results indicating that APS-derived antibodies act to reduce autophagy.
She says: “With the Louise Gergel Fellowship, I propose to build on the exciting results generated from my previous research at UCL”.
Autophagy is a hot topic in scientific research at the moment, and the 2016 Nobel Prize in Medicine was awarded for work on the subject.
One of the available drugs that act on autophagy, sirolimus,has been the subject of a study looking at kidney transplants in patients with APS and the UCL research team believe that pursuing the investigation of autophagy in APS could potentially help patients in the future.
Thursday, 14 September 2017
Our 2017 Christmas cards are now on sale on our website. We have lots of designs and hope there is something for everyone's taste.
Please be aware that we have limited stock and some designs sold out very quickly last year.
For those of you who would prefer to make a donation in lieu of sending cards, please do so on our secure Christmas donation page.
Friday, 1 September 2017
Traditionally, the research agenda has been set by the pharmaceutical industry and researchers themselves, but little consideration has been given to the priorities of women and their partners who have experienced miscarriage. The James Lind Alliance (JLA) is a non-profit initiative with the aim of making healthcare research funders aware of these issues that matter most to patients.
The process involved surveying 1093 participants (932 women who have experienced miscarriage, 8 partners, 17 family members, friends or colleagues, 104 healthcare professionals and 8 charitable organisations) and identifying key stakeholder groups.
From the survey questions, the 25 highest ranked were prioritised to a list of 10 at a final face-to-face workshop in which our charity participated.
In summary, the top 10 priorities were ranked as follows:
- research into preventative
- emotional aspects in general
- investigation and relevance of
pre-existing medical conditions
- emotional support as a treatment
- importance of lifestyle factors
- importance of genetic and chromosomal
- preconception tests
- investigation after different numbers of
- male causal factors
Thursday, 27 July 2017
Written by one of our medical trustees, Professor Anisur Rahman, and Dr Salma Ahmed, a GP from Tower Hamlets, the module takes an hour to complete and provides 1.00 learning credits.