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apssupportuk.bsky.social
APS Support UK
@apssupportuk.bsky.social
27 followers 160 following 28 posts
APS Support UK is dedicated to raising awareness of antiphospholipid syndrome (APS), supporting anyone affected by the condition and furthering research.
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apssupportuk.bsky.social
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
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.
February 5, 2026 at 7:10 PM
apssupportuk.bsky.social
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.
February 4, 2026 at 6:58 PM
apssupportuk.bsky.social
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
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 →”.
February 4, 2026 at 6:58 PM
apssupportuk.bsky.social
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 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.
February 3, 2026 at 6:52 PM
apssupportuk.bsky.social
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
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.
February 2, 2026 at 6:35 PM
apssupportuk.bsky.social
🧪 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
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.
January 30, 2026 at 6:53 PM
apssupportuk.bsky.social
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
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.
January 29, 2026 at 7:49 PM
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January 28, 2026 at 8:10 PM
apssupportuk.bsky.social
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
January 28, 2026 at 8:10 PM
apssupportuk.bsky.social
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
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.
January 27, 2026 at 2:58 PM
apssupportuk.bsky.social
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 “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.
January 26, 2026 at 7:17 PM
apssupportuk.bsky.social
#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
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.
January 22, 2026 at 9:14 PM
apssupportuk.bsky.social
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.
January 21, 2026 at 7:41 PM
apssupportuk.bsky.social
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
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.
January 21, 2026 at 7:41 PM
apssupportuk.bsky.social
🏃‍♀️🏃‍♂️ Saucony LDN 10K 2026 (12 July) — we’ve got 7 charity places left for #TeamAPS Support UK!
Run/jog/walk, get fundraising support + an APS running vest 💙

Email: info@aps-support.org.uk

#London10k #LDN10K #CharityRun #APSSupportUK #APS #AntiphospholipidSyndrome #RunForCharity
Promotional graphic for the Saucony LDN 10K reading “Run for APS Support UK” and “Charity places available now!” with a button-style link “cutt.ly/run-for-us”. Three photos show runners in red APS vests during the event. Background features the Houses of Parliament and Big Ben. Text at the bottom: “Interested? Email us: info@aps-support.org.uk ” and APS Support UK logo at top left.
January 20, 2026 at 6:31 PM
apssupportuk.bsky.social
New research on non-criteria obstetric #APS suggests higher-risk aPL antibody profiles (type/level/combinations) are associated with a higher likelihood of pregnancy complications. Worth a read for clinicians & the APS community: link.springer.com/article/10.1... #AntiphospholipidSyndrome
Graphic titled “Latest Research” showing a browser-style headline: “Not meeting ‘criteria’ doesn’t always mean low risk in pregnancy – aPL profile matters,” alongside a photo of a pregnant person injecting medication into their abdomen. APS Support UK logo at the bottom.
January 20, 2026 at 6:28 PM
apssupportuk.bsky.social
APS Support UK + the Royal College of GPs created a FREE 30-minute eLearning module to help GPs recognise APS (0.5 CPD + certificate).
Community ask: please share the flyer with your GP practice/practice manager: cutt.ly/wtlBaip5
cutt.ly/gp-training-course @rcgp.bsky.social #GPTraining #APSawareness
January 19, 2026 at 3:06 PM
apssupportuk.bsky.social
Cheering on Louise Rogers as she takes on #DogJog for APS Support UK 🐾💙 After her DVT diagnosis, she’s fundraising to support people affected by #AntiphospholipidSyndrome. Please donate/share: www.justgiving.com/page/louise-... #APS #TeamAPS #APSSupportUK
January 16, 2026 at 1:48 PM
apssupportuk.bsky.social
New study used SPECT to assess brain blood flow in primary #APS. MRIs looked normal, but SPECT found reduced flow in some areas—suggesting “hidden” changes: www.jns-journal.com/article/S002... #ClinicalResearch #RareDisease
Graphic titled “Latest Research” showing a mock webpage with the headline “New APS study: brain changes seen even when MRI is ‘normal’”. Beside it is an illustration of a brain with visible blood vessels, with APS Support UK logo at the bottom.
January 16, 2026 at 1:46 PM
apssupportuk.bsky.social
Red APS Support UK slide with a large question mark and text: “So why the extra ‘L’? In medical notes and research, ‘aPL’ is often used as shorthand for antiphospholipid antibodies.” Illustration shows a clinician holding a clipboard. Red APS Support UK slide reading: “You may see: aPL syndrome → APLS. Meaning: ‘antiphospholipid antibody syndrome’. If you’ve been told APLS, it usually just means APS. Learn more at aps-support.org.uk.” Decorative “Phew” starburst in the corner and APS Support UK logo.
January 16, 2026 at 1:41 PM
apssupportuk.bsky.social
Did you know? #APS and APLS usually mean the same thing, just different labels. In medical notes, “aPL” often means #AntiphospholipidAntibodies, so “aPL syndrome” → APLS. If you’ve been told APLS, it generally means APS. Learn more: aps-support.org.uk
#APSSupportUK
A red-and-pink APS Support UK graphic reading: “Swipe to learn more. Did you know? ‘APS’ vs ‘APLS’ — same condition, different label.” Background includes soft, abstract blood cell shapes and the APS Support UK logo. Red APS Support UK slide with text: “You might see the term APS in one place… and APLS somewhere else.” Illustration shows a person at a laptop with question marks above their head. Red APS Support UK slide reading: “Don’t fret! They both refer to antiphospholipid syndrome (APS). Not two different diagnoses.” Illustration shows a gloved hand holding a blood sample tube.
January 16, 2026 at 1:41 PM
apssupportuk.bsky.social
Hannah was 24 when she had a PE after brushing off symptoms as muscle pain. Diagnosed with DVT + PE, needed an emergency thrombectomy, and later diagnosed with APS. Thanks to Hannah + @stoptheclot.bsky.social. Full story: stoptheclot.org/patient-stories/hannahs-story-4 (UK) #APS #DVT #PE #BloodClots
Branded APS Support UK and Stop The Clot “Patient Story” graphic featuring a photo of Hannah in hospital. Quote reads: “My surgeon told me I was one of the luckiest pulmonary embolism patients he had ever seen… Please be aware and don’t brush off symptoms like I did. I was incredibly lucky—but not everyone is.” Background shows soft pink blood cell imagery, with APS Support UK logo bottom left and National Blood Clot Alliance / Stop The Clot logo bottom right.
January 16, 2026 at 1:34 PM
apssupportuk.bsky.social
Rosetrees Trust co-funded PhD studentship: submissions close 19 Jan 2026: aps-support.org.uk/about-aps-support/research/rosetrees-trust-phd-studentship
More about our research funding so far: aps-support.org.uk/about-aps-support/research/progress-so-far #APSResearch #ResearchFunding #APSSupportUK
January 15, 2026 at 8:55 PM
apssupportuk.bsky.social
A recent review summarises how aPL may affect the kidneys. Involvement can vary (not one pattern) and may be subtle early (e.g., raised BP or mild protein in urine). Diagnosis can be complex; biopsy may help in some cases: pmc.ncbi.nlm.nih.gov/articles/PMC12754509/ #APS #KidneyHealth #RareDisease
APS Support UK “Latest Research” graphic featuring a stylised webpage headline reading “Kidney health in APS: signs can be subtle,” alongside an illustration of kidneys and blood vessels on a pink and burgundy background, with the APS Support UK logo in the corner.
January 15, 2026 at 8:47 PM
apssupportuk.bsky.social
January 15, 2026 at 8:43 PM