Tuesday, 8 May 2018

Important information for patients taking hydroxychloroquine

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 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: 

https://www.rcophth.ac.uk/wp-content/uploads/2018/03/Hydroxychloroquine-and-Chloroquine-Retinopathy-Screening-Guideline-and-Recommendations.pdf

There is also a very useful leaflet produced by the Macular Society that you may find helpful: 

https://www.macularsociety.org/sites/default/files/resource/Hydroxychloroquine%20-%20access_0.pdf

Sunday, 29 April 2018

A new awarding winning iBook about antiphospholipid syndrome is now available to download for free.

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

APS Support UK and LUPUS UK are jointly funding research into APS at University College London

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 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

New range of Christmas cards now available

Christmas is just around the corner again so please do consider supporting our charity if you’re sending cards this year. 

This is a great way to raise awareness of APS among your family and friends, as well as help sustain our charity.

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.


Thank you so much for your valued support – together we are stronger.

Friday, 1 September 2017

James Lind Alliance: priority for research into miscarriage

Our charity was delighted to be invited to be a key stakeholder in the priority setting partnership organised by the James Lind Alliance.

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 treatment
  • 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 causes
  • preconception tests
  • investigation after different numbers of miscarriage
  • male causal factors
It was encouraging to note that antiphospholipid syndrome is now established as the most important treatable cause of recurrent miscarriage, and we hope these results will help direct the focus of future miscarriage research so that women with obstetric APS have a more positive outlook.

To read the full paper, please click here.

Thursday, 27 July 2017

MIMS Learning Module now available

Keeping our focus this year on APS education for healthcare workers, the MIMS Learning module for the diagnosis and management of antiphospholipid syndrome is now available.

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. 

Educational Objectives


After reading this activity, healthcare professionals should be better able to:


  • Recognise possible cases of antiphospholipid syndrome (APS)
  • Understand the results of blood tests for antiphospholipid antibodies
  • Manage APS in patients with previous thrombosis
  • Manage pregnancy in patients with APS 

  • http://www.mimslearning.co.uk/antiphospholipid-syndrome-diagnosis-and-management/activity/4882/ 




    Friday, 16 June 2017

    Places for the Manchester Half Marathon on Sunday 15th October 2017

    The Manchester Half Marathon is being held on Sunday 15th October 2017.  

    This award winning half marathon is one of the flattest courses so, if you only enter one half marathon this year, make it the Manchester Half Marathon.

    The route takes runners on wide, closed roads through Old Trafford, Stretford, Brooklands and Sale, and the organisers are once again promising plenty of entertainment and outstanding crowd support. It starts and finishes at Emirates Old Trafford home of Lancashire County Cricket Club.

    Registration is £25 and as places are limited we ask that you try to raise £150 sponsorship money if possible.

    Please contact us if you would like a guaranteed charity place.