APS Support UK

Check out the 2024 edition on the latest research into Antiphospholipid Syndrome (APS), a rare autoimmune disease that causes the blood to clot.

" #Researchers are still trying to understand the full role of β2GPI as well as #AntiphospholipidSyndrome. So whilst these #therapeutics sound exciting, it will probably still be many years before we see them in practice.": buff.ly/r5TlLCA

#MedSky #ChronicIllness

An image showing stethoscopes. The headline says: "General practice, critically endangered, facing extinction." The BMA logo is shown.

In our new podcast @drkatie.bsky.social and @davidwrigley.bsky.social discuss the huge challenges faced by general practice in England, and how the BMA GP committee is working to address these.

Listen now: soundcloud.com/thebma/gpcep...

Instagram carousel cover in pink and pale tones with blood cell background. Text reads: ‘Swipe to learn more. Did you know? Antiphospholipid (aPL) antibodies can change over time. Blood tests don’t always tell the full story in one go.’ Illustration of a hand holding a blood test tube. APS Support UK logo at bottom.

Pink slide with a large white question mark on the right and faint blood cell background. Text reads: ‘What does that mean? Antiphospholipid antibodies can sometimes be temporary. They may appear for a short time (for example, around infections) and then fade. That’s why repeat testing matters.’ APS Support UK logo at bottom.

Pink slide with faint blood cell background. Text reads: ‘That’s why APS diagnosis usually needs: two abnormal blood tests x2, at least 12 weeks apart — to check if antibodies are persistent.’ Includes illustrations of two blood tubes and a calendar. ‘Swipe for more →’ at the bottom. APS Support UK logo at bottom.

Pink slide with faint blood cell background. Text reads: ‘If you’re waiting for repeat testing, it can feel stressful — but you’re not alone. Trusted info + support: aps-support.org.uk. Save this post + share it with someone who might need it.’ Illustration of a clinician taking blood from a seated person. APS Support UK logo at bottom right.

#AntiphospholipidAntibodies (aPL) can be transient; #APS diagnosis typically requires persistent positivity on ≥2 occasions at least 12 weeks apart, interpreted alongside clinical history ( #thrombosis and/or #pregnancy morbidity): cutt.ly/blood-tests

APS Support UK “Latest Research” graphic. A stylised browser window headline reads: “Saddle PE in a 27-year-old: clinicians suspect catastrophic APS,” with a small note “Full study link in post.” On the right, an illustration of lungs shows a clot at the split of the main pulmonary artery, labelled “clot.” APS Support UK logo appears at the bottom left on a white shape, with soft pink/red blood-cell imagery in the background.

Case report: 27-year-old with a saddle PE (clot at the split of the main lung artery) causing right-heart strain. CTPA+echo findings led clinicians to suspect catastrophic APS (CAPS). pmc.ncbi.nlm.nih.gov/articles/PMC...
#APS #PE #Radiology

Antiphospholipid Syndrome Mimicking Acute Exacerbation of Interstitial Pneumonia: A Case Report and Literature Review
onlinelibrary.wiley.com/doi/10.1002/...

Today's Paper of the Day is:

Antiphospholipid Syndrome: A Comprehensive Clinical Review

https://criticalcarereviews.com/latest-evidence/paper-of-the-day

Join us to read 1 paper per day and stay up-to-date as we cover the spectrum of critical care across 2026

Did you know 1 in 2000 Americans have Antiphospholipid Syndrome (APS) a #rare, #autoimmune clotting disorder.

This month we celebrate ##RareDiseaseAwarenessMonth and want you to #ShowYourStripes

Catastrophic antiphospholipid syndrome with eosinophilia mimicking hypereosinophilic syndromes with disseminated intravascular coagulation: a case report - PubMed Our case shows that eosinophilia can accompany catastrophic antiphospholipid syndrome, and this can mimic eosinophil-associated disorders with disseminated intravascular coagulation. Identifying antiphospholipid antibodies is important for differential diagnosis when treating unexplained eosinophili …

Catastrophic antiphospholipid syndrome with eosinophilia mimicking hypereosinophilic syndromes with disseminated intravascular coagulation: a case report

From Brain To Blood and Beyond — The widespread impact of Antiphospholipid Syndrome. www. a chronic voice .com

"An impact in #CognitiveFunction is preferable to saying ‘ #BrainFog ’, which often makes the experience sound too trivial. Those who live with ‘brain fog’ know how devastating its impacts are.": buff.ly/2N3DKad

#ChronicIllness #spoonies #NEisVoid #MondayBlogs #disabled

Catastrophic antiphospholipid syndrome is a life-threatening variant of antiphospholipid syndrome that is characterized by widespread, rapidly progressing thrombosis involving 3 or more organ systems within a 1-week period.
➡️ www.cmaj.ca/lookup/doi/10.1503/cmaj.250654

APS Support UK ‘Latest Research’ graphic. A stylised webpage window reads, ‘What does the latest research say about APS and surgery risk?’ with small text above saying ‘Full study link in post’. On the right is a photo of a surgical team in masks and caps in an operating theatre. Pale pink background with soft blood cell shapes. APS Support UK logo in the bottom left.

#AntiphospholipidSyndrome (APS) in orthopaedic foot & ankle surgery. Findings suggest higher post-op clot risk for #APS vs matched controls, including higher #DVT at 90 days even with prophylaxis, and higher PE at 90 days without prophylaxis: journals.sagepub.com/doi/10.1177/...

APS Support UK “Latest Research” graphic featuring the headline “Can Vitamin D Really Support Your Immune System?” on a stylised webpage window. Background shows soft pink/red blood-cell shapes. On the right is a photo of vitamin D–rich foods (salmon, eggs, cheese, peas, cottage cheese, parsley) with a chalkboard label reading “Vitamin D.” APS Support UK logo appears at the bottom left.

Doctor explains how vitamin D helps regulate immune responses—supporting immune cells and helping prevent overactive reactions. Evidence is mixed but some studies suggest fewer infections with consistent use. Avoid excess intake: verywellhealth.com/can-vitamin-d-help-with-your-immune-system-11882152

Graphic titled “Patient Story” featuring a quote from Maja: “It remained a mystery why an otherwise healthy and active teenager would develop blood clots. After further testing, I was diagnosed with May-Thurner syndrome and triple-positive antiphospholipid syndrome.” On the right is a circular photo of Maja smiling outdoors. APS Support UK logo appears bottom left, and National Blood Clot Alliance “Stop The Clot” logo appears bottom right, over a soft background of red blood cell imagery.

Maja was just 16 when she developed blood clots (DVT & PE). After tests, she was diagnosed with May-Thurner syndrome and triple-positive #AntiphospholipidSyndrome. She’s sharing her story to help others. Read more: www.stoptheclot.org/patient-stor... @stoptheclot.bsky.social #APS #PatientStory

Branded APS Support UK “Latest Research” graphic. A stylised browser window shows the headline “APS increasingly discussed in healthcare training, new review suggests” with “Full study link in post” in the search bar. Alongside is a close-up photo of a gloved hand holding three blood sample tubes labelled “Anticardiolipin IgG”, “Lupus Anticoagulant”, and “Anti-beta2-glycoprotein-1”. APS Support UK logo at the bottom left, with a soft background of red blood cells.

New 2025 review highlights why early recognition of #AntiphospholipidSyndrome matters—incl. appropriate antibody testing (and repeat testing) and risks of delayed diagnosis. Encouraging to see wider clinician training: cutt.ly/RtnlpBl2 #APSresearch #Awareness #APS

✈️ Did you know? Long-haul travel (flights >4h) is linked with higher DVT risk. If you live with APS, plan ahead before you fly now!!

Move often, do calf/foot exercises, hydrate, and consider well-fitted compression socks. Guidance + checklist: aps-support.org.uk/self-help/travel-advice

APS Support UK “Latest Research” graphic featuring a stylised web page window with the headline “Hope on the horizon: new approaches being explored for refractory OAPS” and the note “Full study link in post.” The background shows soft red blood-cell shapes, plus a photo of a stethoscope lying over an ultrasound image. APS Support UK logo appears at the bottom left.

New review on obstetric APS (OAPS): why it happens, how risk may be better predicted, and therapies being explored for refractory cases (beyond aspirin + heparin), including HCQ, IVIG, statins & biologics. Read: cutt.ly/ztbgDgHY #AntiphospholipidSyndrome #APS #OAPS #PregnancyResearch #MaternalHealth

Pink background with APS Support UK logo at bottom left. Text reads: “…also activities like:” with labels: “Communicating/Reading,” “Planning journeys,” and “Moving around →”. Illustrations show a stack of books, a map, and a mobility scooter.

Pink and beige background with APS Support UK logo at bottom left. Text reads: “Scored with points: You score points for the help you need with each activity. Daily Living + Mobility are scored separately.” Two illustrated people hold up score cards showing “6” and “8”.

Pink background with APS Support UK logo at bottom right. Text reads: “Been refused? You’re not alone. Lots of people are refused or awarded less than expected — this is common. The key is knowing you can challenge the decision.” It lists: “Step 1: Mandatory Reconsideration” and “Step 2–3: Appeal & Tribunal”. At the bottom: “Where to get guidance: GOV.UK, Citizens Advice, Benefits and Work.” A faint large X graphic appears in the top right.

Pink and light beige background with APS Support UK logo at bottom left. Large text reads: “Swipe to learn more → Did you know? Successful Personal Independence Payment (PIP) claims aren’t based on your diagnosis. They’re based on how your health affects daily life & mobility.” Illustration of hands holding a pink heart with a wheelchair symbol.

Pink background with a large white question mark on the right and APS Support UK logo at bottom left. Text reads: “What is PIP? A UK benefit for people with a long-term health condition or disability.” Bottom right text reads: “It has 2 parts: Daily Living + Mobility.” Illustration of a walking frame (zimmer frame) at the bottom.

Pink background with APS Support UK logo at bottom left. Text reads: “It’s not ‘condition-based’. PIP looks at how you manage specific activities like:” with labels: “Preparing food,” “Washing/Dressing,” and “Managing treatment.” Illustrations show hands chopping food, a shower head, and medication blister packs. Bottom text reads: “Swipe for more →”.

PIP isn’t awarded based on diagnosis, it’s based on functional impact (daily living + mobility). Refusals are common; you can challenge via Mandatory Reconsideration → Appeal → Tribunal. Official guidance: www.gov.uk/mandatory-reconsideration www.gov.uk/appeal-benefit-decision

Graphic titled “LATEST RESEARCH” showing a stylised web page with the headline “More Options for Low Platelets — But Risk Still Matters in APS.” A circular image shows a large platelet over red blood cells. APS Support UK logo in the bottom left.

TPO-RAs in #ITP linked to #APS and/or lupus (#SLE). TPO-RAs are medicines that stimulate platelet production. In this retrospective multicentre cohort, most responded, but thrombosis was more frequent in APS, highest in “definite APS”: cutt.ly/ItvXQbLw #Thrombosis #Hematology

Graphic for APS Support UK titled “Patient Story”. On a magenta background with pale blood cell imagery, a quote reads: “My anxiety spikes frequently when I have a weird feeling in my calf or a warm sensation in my arm, or a random sharp pain in my chest… It’s very important to be proactive, and when you see or feel something, don’t hesitate to get checked!” Signed “– Jagoda”. A circular portrait photo of Jagoda smiling, wearing glasses, appears at the bottom right. APS Support UK logo at the bottom left.

Jagoda’s APS story is live 💛 Postpartum clots, loss, hope, and her rainbow baby. “It’s important to be proactive—if you see/feel something, don’t hesitate to get checked!” Read: cutt.ly/patient-stories #APS #AntiphospholipidSyndrome #PatientStory

A pink/red framed graphic with a soft pink background and floating red blood cells. In the centre is a paper-like panel with a faint grid and pink watercolour splash. Large text reads “Research Roundup!” with a smaller “JANUARY” label on a pink document. Two illustrated people stand either side holding a magnifying glass and a pencil, with two “RESEARCH” papers floating near the top corners. A button at the bottom reads: “Links in comments”. APS Support UK logo appears bottom left.

🧪 APS research roundup. This month we shared studies on:
• aPL & IVF/ICSI • kidney involvement • brain blood flow (SPECT) • non-criteria obstetric APS • stroke (case report)
• recurrent MI risk markers • supplements + autoimmune flares
Link hub: linkmix.co/50443909 #APS #ResearchUpdate

Graphic titled “Latest Research” showing a web-page style panel with the headline “Think twice before taking ‘immune boosting’ supplements”. On the right are wooden spoons holding assorted tablets and capsules. Pink/red blood-cell shapes appear in the background, and the APS Support UK logo is in the bottom-left corner.

Research shared by @lupus.org flags 227 herbal supplements with immune-activating properties; 15 had the strongest evidence & may trigger/worsen autoimmune skin flares: lupus.org/news/new-study-identifies-15-herbal-supplements-to-potential-skin-flare-activity-in-people-with

Headache & migraine are common in APS and can include aura (flashing lights/zigzags), nausea and vomiting. A European study of 1,000 APS patients reported migraine in up to 20%. Sudden/new or stroke-like symptoms: call 999 (or NHS 111 for urgent advice). More: cutt.ly/aps-and-the-brain

Branded APS Support UK “Latest Research” graphic in burgundy and pink. A stylised webpage window reads “Could immune markers help predict a second heart attack?” with “Full study link in post” in the search bar. On the right is a photo of ECG printout with electrode leads. APS Support UK logo appears at the bottom left.

New paper: antiphospholipid antibodies (aPL) + ANA/anti-ENA positivity reported as an independent risk factor for recurrent myocardial infarction in a 3-year cohort (n=458): pubmed.ncbi.nlm.nih.gov/41543080/

#APS #Autoimmune #Cardiology #Thrombosis #Research

APS Support UK “Patient Story” graphic featuring a quote about waiting 12 weeks for repeat blood tests and the “highly unlikely” result being reality, alongside a smiling photo of Louise Rogers on a beach, with the APS Support UK logo at the bottom left.

Last week we shared Louise Rogers’ fundraiser — and Louise has now kindly shared her patient story too. 💙
“Unfortunately, the ‘highly unlikely’ was reality.”
Read Lou’s story: cutt.ly/patient-stories
#APS #AntiphospholipidSyndrome #PatientStory #RareDiseaseAwareness #BloodClotAwareness

APS Support UK “Latest Research” graphic in burgundy and pink. A stylised browser window shows the headline: “Single case report underscores the importance of investigating clotting causes in young stroke.” A CT brain scan appears on the right with a red circle highlighting an area. APS Support UK logo sits at the bottom left.

#CaseReport: ischaemic stroke in a 34-year-old with no conventional vascular risk factors. Work-up found persistent antiphospholipid antibodies and a new HIV diagnosis. Authors highlight the value of broad aetiology work-up in young #Stroke patients: cutt.ly/EtzPWWrH #AntiphospholipidSyndrome #APS

Pink slide showing icons of a mini-pill pack, a condom, and a Mirena coil. Text reads: “OTHER OPTIONS:” “PROGESTOGEN-ONLY PILL (MINI-PILL)” “BARRIER METHODS (CONDOMS/CAP)” and “MIRENA COIL →” APS Support UK logo at bottom left.

Pink slide with a large sanitary pad illustration. Text reads: “HEAVY PERIODS:” “IF YOU TAKE ASPIRIN/WARFARIN/DOACS, HEAVIER BLEEDING CAN HAPPEN AND MAY LEAD TO IRON DEFICIENCY ANAEMIA.” “ONE OPTION OFTEN DISCUSSED (IF YOU’RE NOT TRYING TO CONCEIVE AND DON’T HAVE FIBROIDS): MIRENA COIL.” APS Support UK logo at bottom left.

Pink slide titled “PERIMENOPAUSE/ MENOPAUSE & HRT.” Text explains: “HRT TABLETS (ORAL) ARE LINKED WITH A HIGHER CLOT RISK AND AREN’T USUALLY RECOMMENDED IN APS. HRT SKIN PATCHES MAY BE AN OPTION TO DISCUSS.” It also says: “THERE’S ALSO CLONIDINE (NOT A HORMONE), SOMETIMES USED IN LOW DOSES FOR HOT FLUSHES—ASK YOUR CLINICIAN IF APPROPRIATE.” Bottom text: “DOWNLOAD OUR WOMEN’S HEALTH FACTSHEET →” APS Support UK logo at bottom right.

Pink and pale background with an illustration of an “Oestrogen 2mg Tablets” pack. Text reads: “SWIPE TO LEARN MORE →” and “DID YOU KNOW? HORMONES CAN INCREASE YOUR BLOOD CLOT RISK IN APS!” APS Support UK logo at bottom left.

Pink background with a person holding tablets and a hormone/chemical icon behind them. Text reads: “IF YOU HAVE ANTIPHOSPHOLIPID ANTIBODIES / APS, SOME HORMONE OPTIONS CAN INCREASE CLOT RISK.” and “IT’S WORTH CHECKING WHAT’S SAFEST FOR YOU. →” APS Support UK logo at bottom left.

Pink slide with red blood cell illustrations and a small clot graphic. Text reads: “CONTRACEPTION: KEY POINT” and “COMBINED PILL = CONTAINS OESTROGEN.” Followed by: “IN APS, THIS ISN’T USUALLY RECOMMENDED BECAUSE OESTROGEN CAN INCREASE THE RISK OF VENOUS THROMBOEMBOLISM. →” APS Support UK logo at bottom right.

Did you know? In #APS, oestrogen-containing contraception isn’t usually recommended due to clot risk. Progestogen-only methods, barrier methods & the Mirena coil are options. In menopause, oral #HRT isn’t recommended, while patch HRT may be an option to discuss with your specialist: cutt.ly/ctzx18CP