Tuesday, 14 February 2017

Antiphospholipid antibodies disappearance in primary antiphospholipid syndrome

Research has been published looking at the controversy over negative antiphospholipid antibody results in people who have been diagnosed with primary APS at an earlier stage.

The authors of this paper looked at patients who had clearly been positive for the blood tests and had a diagnosis of APS, but whose subsequent tests had been negative.

The study suggest that, in primary APS, persistent negative antiphospholipid antibody profile is not an indication to interrupt oral anticoagulant therapy.

https://cancerologyoncologysfakianakis.wordpress.com/2017/02/13/antiphospholipid-antibodies-disappearance-in-primary-antiphospholipid-syndrome-thrombosis-recurrence/ 

Friday, 10 February 2017

Festival volunteering opportunity

Thank you to the two anonymous (so far) people who nominated APS Support UK as their chosen charity when they volunteered with My Cause UK at the Boomtown Fair last summer, earning us a donation of £100.

My Cause provides unique volunteering opportunities at music festivals and events across the UK, allowing volunteers to raise funds for any charity they choose in return for their time and effort. In return for the time that a volunteer gives them, they make a donation on their behalf to their chosen charity.

So, if you're a festival go-oer and want to get involved, please have a look at their website:

http://mycauseuk.com/charity/aps-support-uk/

Friday, 3 February 2017

APS Specialists Directory

Thanks to all the patients who have recommended their APS doctors to us and allowed us to produce the UK Specialists Directory. 

We have maintained this unique directory for over four years now and, thanks to information sharing, it has helped many APS patients finally see a doctor who understands their condition.

We have just added over eight new doctors this year alone and now have a list of almost 130 throughout the UK.

Please do let us know if your APS specialist is missing from the list and thanks again for making this possible.
 
http://www.aps-support.org.uk/…/specialists-in-your-area.php

Tuesday, 31 January 2017

PREGNANTS working group releases results of large study

The PREGNANTS working group, (PREGNancy in women with ANTiphospholipid Syndrome), has just released the results of a large study.

The trial investigated 750 pregnancies in women with primary APS looking at the outcomes associated with the different types of antibodies - Lupus anticoagulant (LA), anticardiolipin (aCL) and the anti-beta-glycoprotein1 (ab2GPI).

They found that aCL is the most common antiphospholipid antibody present, but ab2GPI is the one associated with the lowest livebirth rate and highest incidence of pre-eclampsia, low weight babies and stillbirth, compared to presence of aCL or LA alone.

This pivotal study will help guide research in the future, thanks to all those women who took part.
http://www.ajog.org/article/S0002-9378(17)30148-5/fulltext

Friday, 23 September 2016

Christmas cards now on sale

Our 2016 Christmas cards are now on sale from our website

We have lots of designs and hope we have something for everyone's taste as this is a great way to raise awareness of APS/Hughes syndrome as well as help sustain our charity.

Thank you if you are able to support us this way. 

http://www.hughes-syndrome.org/get-involved/visit-our-shop.php#xmas

Friday, 9 September 2016

Patients' Day now on YouTube

We held our annual APS Patients’ Day for our members at St Thomas’ Hospital, London earlier this year in May, and were fortunate to have leading experts and patients discussing a wide range of topics including research, anticoagulation management and testing.
If you would like to listen to or read any of the presentations, please click on the links below:
Our charity would like to thank all the speakers for generously giving their time and expertise to help our patient group, and also David Schutt and Frances Dixon who kindly volunteered their professional skills to produce the videos and PDF.

Tuesday, 30 August 2016

New APS treatment for some

The results from the Rivaroxaban in APS trial were published in the Lancet Haematology Journal on 3rd September 2016. 

The study was led by University College London Hospital and Dr Hannah Cohen, Lead researcher, consultant in haematology at UCLH has written the following statement for us: 

“We have shown in the RAPS trial that rivaroxaban could be an effective, safe and convenient alternative to warfarin in some patients with antiphospholipid syndrome. 

We intentionally included in RAPS only antiphospholipid syndrome patients who had venous blood clots requiring standard intensity warfarin, target INR 2.0-3.0. We caution, therefore, that the results do not apply to other groups of patients with antiphospholipid syndrome and venous blood clots who need higher INRs or with blood clots in arteries such as in stroke patients, in whom further studies are required.” 

So, to be very clear, if you have had a DVT or PE and have an INR range of between 2.0-3.0, then you now have an alternative treatment to warfarin. 

Rivaroxaban is taken in tablet form daily, does not need to be monitored at all and only stays in your system around 24 hours. 

Please speak to your doctor if you meet the criteria and wish to switch your medication. 

To view the full text of the RAPS paper, please click here: http://www.thelancet.com/pdfs/journals/lanhae/PIIS2352-3026(16)30079-5.pdf 

These results are a real breakthrough for some patients, rivaroxaban being the only new medication for APS in over a decade. However, we do know that there is still much work to do and are collaborating in the proposed Rivaroxaban in Stroke and APS trial. We will keep you posted!