APS Support UK - for people with antiphospholipid syndrome

🌬️ Understanding Lung Issues in Catastrophic Antiphospholipid Syndrome (CAPS) 🌬️

Did you know that the lungs can be heavily affected in people with catastrophic antiphospholipid syndrome (CAPS), a rare but life-threatening condition? New research from the CAPS Registry has shed light on what happens when the lungs get involved. Here are some key findings:

🔹 Pulmonary embolism (blood clots in the lungs) is the most common issue. 🔹 Some patients experience diffuse alveolar hemorrhage (bleeding in the lungs), often linked to a storm of immune activity. 🔹 There’s evidence of lung inflammation not caused by clots, suggesting other underlying factors.

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These insights can help doctors spot lung complications early and provide the right treatment. Understanding more about CAPS and its impact on the lungs is crucial for improving patient outcomes!

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🚨 New Insights into (APS) Testing for Women of Reproductive Age! 🚨

Researchers in Southwest China have made a breakthrough in improving how we detect anti-β2 glycoprotein I (aβ2GPI) antibodies, which play a key role in diagnosing APS. Their study set the first-ever local reference levels for these antibodies in healthy women of reproductive age. 🧬

Why does it matter? Accurate antibody cutoffs mean better diagnosis, helping doctors identify APS earlier and more precisely. The research also found that IgM antibodies (a specific type of aβ2GPI) were particularly important for women in this age group. 📊

If you're in Southwest China, this is a big step toward personalised, local healthcare and hopefully this will translate to globally soon! 💪

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Exciting news in the fight against autoimmune diseases! 🙌 Yale University's Colton Center for Autoimmunity has just announced support for 11 groundbreaking research projects, including those focused on (APS). These projects aim to revolutionise treatments for conditions that impact millions, offering new hope to those affected by APS, lupus, and other autoimmune disorders.

This grant award is going to Jaime Grutzendler, M.D., Dr. Harry M. Zimmerman and Dr. Nicholas and Viola Spinelli Professor of Neurology and Neuroscience for their project "Therapeutic Targeting of Thromboangioplasticity in Autoimmune Antiphospholipid Syndrome".

With grant funding, mentorship, and industry connections, these scientists are on the cutting edge of life-changing research. Let's celebrate the incredible strides being made toward better treatments and outcomes for patients! 💙

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(BPD) is a mental health condition characterised by intense emotions, unstable relationships, and fear of abandonment. It can sometimes be misunderstood, but when coupled with a rare autoimmune condition like (APS), things can get even more complex.

APS can cause (thrombosis) throughout the body, including the brain, potentially affecting mental health. This case study highlights how a woman with BPD and APS experienced brief psychotic episodes and depression after major APS-related events.

While this connection between APS and psychiatric symptoms like psychosis isn’t fully understood yet, it underscores the importance of keeping an eye on both physical and mental health when managing autoimmune conditions.

👩‍⚕️ If you or someone you know is living with a chronic illness and experiencing changes in mood or perception, don’t hesitate to seek support. Mental and physical health are closely connected!

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For any newcomers, (APS) is an autoimmune disorder that causes and can lead to many complications including pregnancy loss. It can develop on its own or alongside other like lupus. In rare cases, it can progress into a life-threatening form called (CAPS), which affects multiple organs quickly: cutt.ly/catastrophic-aps

🩸 The condition is linked to specific antibodies that increase the risk of clots. It can lead to issues like strokes, miscarriages, and heart problems. Early diagnosis and proper management, such as blood thinners and other therapies, are key to reducing these risks.

🔬 The following review delves into its pathogenesis, clinical presentation, and diagnostic challenges in the context of CAPS, emphasising the need for immediate and intensive therapy to manage this life-threatening condition.

👩‍⚕️ The review emphasises the need for a multidisciplinary approach to treating CAPS, combining anticoagulation, corticosteroids, plasma exchange, and immunoglobulin. It also highlights the importance of ongoing monitoring to prevent recurring clots and manage long-term complications. By advancing understanding of APS and CAPS, the review aims to improve diagnosis, treatment, and patient care for better health outcomes.

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A 28-year-old man experienced multiple over 31 months, despite treatment. It was later discovered that he had (APS). After adjusting his treatment, his condition improved, and he hasn't had further heart problems for 20 months. This case highlights the importance of considering APS in younger patients with recurring heart issues but no typical risk factors, as it can be life-saving: cutt.ly/aps-and-the-heart

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🚨 New Study Sheds Light on (APS) and Blood Clots! 🧬🩸

Researchers have discovered that patients with APS, show higher levels of oxidised "bad" cholesterol (OxLDL) and antibodies against it. OxLDL and anti-OxLDL may function as valuable biomarkers for monitoring APS and may help doctors predict and monitor blood clot risks in APS patients. Knowing these levels could be key to better treatments and prevention strategies. This is a big step toward understanding APS and keeping patients safer!

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🌟 Celebrating an Incredible Milestone! 🌟

Our amazing intrepid ambassador, Phil Godfrey, has done it again! He has now raised an astounding £400,000 for APS Support UK! Through his tireless efforts visiting Rotary Clubs across the UK, alongside churches, women’s groups, and speaking to international audiences via Zoom, Phil has continued to spread awareness of .

Phil’s dedication stems from his personal journey after losing his wife Christine to APS in 2015. His work has made an incredible impact, and we cannot thank him enough for his ongoing commitment to helping those affected by .

Want to support Phil’s mission or learn more? Check out his JustGiving page here: justgiving.com/fundraising/phil-godfrey-tour

Thank you so much, Phil! 👏💙

🚨 Understanding the Causes of Miscarriage 🚨

Today's Parent explores the complex factors that can lead to miscarriage, which affects up to 1 in 5 known pregnancies. Alongside common causes like chromosomal abnormalities and maternal age, the article sheds light on the impact of autoimmune disorders. Conditions such as antiphospholipid syndrome (APS) increase the risk of miscarriage, especially in the second and third trimesters, and lead to recurrent pregnancy loss.

The article highlights the importance of managing chronic conditions like lupus and thyroid disorders, which can also raise miscarriage risk. For those dealing with autoimmune conditions, it’s essential to work closely with healthcare providers to optimise health before and during pregnancy.

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If you've experienced miscarriage, know that you're not alone. Reach out for support from healthcare professionals, counsellors, or support groups.

For further information about APS and pregnancy, visit our website: cutt.ly/aps-and-pregnancy

It can be devastating to miscarry one baby after another, and the experience can place enormous strain on you and your partner. The Miscarriage Association's website: www.miscarriageassociation.org.uk provides a wealth of information on coping strategies, leaflets and helplines all designed to support your grieving process. Similarly, losing a baby later on in pregnancy can be shattering - Sands, the stillbirth & neonatal death charity provides support and information to anyone affected by this tragedy: www.sands.org.uk

Earlier this year, we shared some incredible news about ( ) and the impactful work of Dr Thomas McDonnell. Here's a quick recap and a new development:

1️⃣ April 2024: We were thrilled to announce that APS would be featured on Season 2 on Sky HISTORY, with a special episode exploring the possibility that Queen Anne I of Great Britain may have suffered from APS. Our Medical Vice Chair, Professor Anisur Rahman, and Dr Thomas McDonnell provided expert insights on the show. 🎥

history.co.uk/shows/royal-autopsy

2️⃣ December 2022: We proudly shared that Dr Thomas McDonnell won the Emerging Leaders Prize from the Medical Research Foundation for his groundbreaking research on APS and lupus, securing £20,000 to advance his work. 🏆

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🚨 NEW: The Medical Research Foundation has now highlighted how their support enabled Dr McDonnell's team to acquire a cutting-edge liquid handling robot, featured in the recent episode of on Sky HISTORY!

Catch up on Dr McDonnell's fascinating work and how APS research is making waves: cutt.ly/AeWTtUaX

Thank you to Dr McDonnell and everyone involved in these important advancements—let's continue to raise awareness about APS and support groundbreaking research! 💪🔬

🔥 Record Heat, Air Pollution & Autoimmune Diseases: A Growing Concern 🏥

As the UK faces record-breaking temperatures and rising air pollution levels, the impact on those with compromised immune systems is becoming increasingly concerning. In British Columbia, people like Brenda Bergen, who has battled lupus for 36 years, are struggling to cope with the intense heat and wildfire smoke. These conditions can trigger severe symptoms—extreme fatigue, breathing issues, and even reduced effectiveness of essential medications. 🌡️💨

We urgently need more research into how extreme weather and pollution are affecting vulnerable populations. As climate change escalates, so do the risks for people with autoimmune diseases. Let's push for action and support those who need it most. 🌍💪

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🎓 The ERN RECONNET webinar season 2024-2025 is coming up!
👥 The new season will see as first special guests Dr. Radin and Dr. Foddai, both from the Centre of Research of Immunopathology and Rare Diseases (CMID), Coordinating Centre of the Network for Rare Diseases of Piemonte and Valle d'Aosta - Torino (Italy) and our ERN ReCONNET Young Representatives, moderated by Prof. Savino Sciascia.
💡 This webinar will focus on antiphospholipid syndrome and in particular on understanding the meaning of aPL antibodies lab results using lay language.
🎯 Target audience will be patients, caregivers, and family members.

⭐️ This is an extremely interesting event, join the ERN ReCONNET team on Sept. 11th! Look forward to welcoming you all.

✍️ Registration is open and free: bit.ly/4dF5UjC
⚙️ ERN ReCONNET resources on APS are freely available and can be seen here:
reconnet.ern-net.eu/disease-aps/
ℹ️ Info on the ERN ReCONNET Working Group on ERN ReCONNET Young:
reconnet.ern-net.eu/wg-ern-young/

🗞 Newsletter subscription: bit.ly/44wk7La
💻 All webinars can be seen here: bit.ly/3DxXDhi

🔬 New Insights on Thrombotic (APS) in ICU Patients

A recent study delved into the blood-related complications of critically ill patients with thrombotic APS, a condition that can seriously affect organs like the kidneys, heart, and brain. The study found that a whopping 93% of these patients had low platelet counts, often leading to severe outcomes in the ICU: cutt.ly/aps-and-the-blood

Key Takeaways:

▪ Thrombocytopenia (low platelets) is extremely common in severe APS cases.
▪ Some patients showed signs of related conditions like thrombotic microangiopathy (TMA) and disseminated intravascular coagulation (DIC), which increased mortality risk.
▪ Investigating other possible causes, like heparin-induced thrombocytopenia (HIT), is crucial for better treatment outcomes.

Understanding these blood complications is essential for improving the care of APS patients in critical condition.

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🧠 New Study Suggests a Possible Link Between Mental Health Disorders and Immune System Abnormalities 🧩

Recent research is exploring a fascinating connection between certain abnormalities and mental health conditions. Specifically, the study looks at (aPL), which are usually linked to , but now seem to also have a potential role in psychiatric issues like , , and even .

While these findings are still in the early stages and more research is needed, it’s an important step in understanding how our immune system might affect brain function. This could open new doors for better treatments in the future!

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🔍 New Study Alert: Antibodies Linked to Hearing Loss

Researchers have found that nearly 30% of patients with a rare hearing disorder, (AIED), also have certain antibodies (called ) in their blood. These antibodies are usually linked to other autoimmune issues, like lupus, but this study shows they might also play a role in hearing problems. The condition often causes rapid hearing loss in both ears and can include symptoms like dizziness and ringing in the ears. The findings suggest that testing for these antibodies could help doctors better treat and manage hearing loss in these patients.

Find out more bout APS and the ears here: aps-support.org.uk/about-aps/what-are-the-symptoms/ears

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Researchers have found that certain immune systemmarkers, specifically antiphospholipid antibodies (aPLs), antinuclear antibodies (ANA), and anti-extractable nuclear antigen autoantibodies (anti-ENA), could help predict the risk of having another stroke. This study followed 245 stroke patients over three years and discovered that those with these specific antibodies were more likely to experience a second stroke. However, there’s good news: a common medication, hydroxychloroquine (HCQ), showed promise in reducing the chances of stroke recurrence in these patients. This could be a game-changer in stroke prevention! 🧠💊

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🌟 Meet the inspiring mother-daughter duo, Alexandria Walker and Leah Bridgeman, who are taking on the Cardiff 10K on September 1st to raise funds for APS Support UK! 🌟

Alexandria has bravely shared her journey with (APS), that led to the heartbreaking loss of two pregnancies. Despite the challenges, she’s determined to make a difference, and with her daughter Leah by her side, they’re running not just one, but TWO 10K races!

These two dedicated women are not just running for themselves, but for everyone affected by APS. By supporting them, you’re helping to raise awareness and funds for vital research and support services that could prevent others from facing the same pain.

Let's rally behind Alexandria and Leah! Every donation, no matter how small, can make a huge difference. You can contribute to their cause through their JustGiving pages below:

👉 Alexandria's page: cutt.ly/alexandrias-justgiving
👉 Leah's page: cutt.ly/leahs-justgiving

Thank you so much for your generosity and support!

Yesterday was Rainbow Baby Day, a day of hope and remembrance for families who have experienced pregnancy loss. It's timely that Australia has just released its first guidelines for recurrent pregnancy loss, setting an important precedent. Unlike the UK, where testing often isn't offered until after three miscarriages, Australian guidelines now recommend investigations after just two losses. This change is crucial for conditions like antiphospholipid syndrome, a blood clotting disorder that can be identified and treated early to prevent further loss. We hope the UK follows suit soon, so more families can get the support they need sooner!

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🌈 Today is Rainbow Baby Day 🌈

We understand that this day can bring a mix of emotions, especially for those who have experienced baby loss due to (APS). Whether you have your Rainbow Baby, are navigating a loss, or are trying to conceive after loss, please know you are not alone 💙🧡

At APS Support UK, we are dedicated to helping women with APS achieve their dream of having a Rainbow Baby. In 2020, we proudly funded Dr. Jennifer Tamblyn’s ASSIST study at the University of Birmingham, which focuses on improving pre-conception risk stratification for women with APS. This groundbreaking research has generated pilot data with significant implications for those facing recurrent miscarriages due to APS. The findings supported a large, multi-centre study in collaboration with Tommy's charity, aimed at improving outcomes and paving the way for more successful pregnancies.

Our goal is to ensure that every woman with APS has the best possible chance of bringing home their Rainbow Baby. To learn more about our research progress, visit: cutt.ly/research-progress-so-far.

💙🧡 We’re here for you, whenever you need to talk. 💙🧡

Sands, the stillbirth & neonatal death charity

Win £250 worth of school uniform in easyfundraising's Back to School giveaway! To get involved, sign up as one of our supporters and then shop with participating retailers via easyfundraising.org.uk website or app before August 31st! Don't miss out, sign up now: cutt.ly/aeb7gwQM

🧬 New Criteria for Diagnosing Antiphospholipid Syndrome Shows Promise in Mexican Study 🧬

A recent study evaluated how well the new 2023 American College of Rheumatology/EULAR criteria work for diagnosing (APS) in Mexican patients. The results are encouraging!

🔍 Key Findings:

▪ The new criteria are very specific, meaning they’re good at correctly identifying those who do not have APS.
▪ They were particularly accurate for patients with primary APS (PAPS), especially those with a history of .
▪ The new criteria might be better at spotting patients at higher risk of severe complications.

This could mean better, more targeted care for people with APS! 🚑✨

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American College of Rheumatology EULAR

Juliana was just 13 when she lost her aunt to blood clots just days after childbirth.

Shortly after, she experienced leg pain and breathing issues, leading to a diagnosis of triple-positive . Despite multiple DVTs, PEs, and struggles with treatment, Juliana eventually found a treatment that worked after nearly facing catastrophic antiphospholipid syndrome (CAPS). Now healthy, she’s grateful for life and proud of how far she’s come.

You can read Juliana's full story here: stoptheclot.org/patient-stories/julianas-story

Stop the Clot

🚨 New guidelines on the investigation and management of Antiphospholipid Syndrome (APS) 🚨

The British Society for Haematology (BSH) has updated its guidelines on the investigation and management of Antiphospholipid Syndrome (APS). APS is a serious autoimmune disorder that can cause blood clots and pregnancy complications. These guidelines help healthcare professionals diagnose and treat APS effectively.

🔍 The guidelines are based on the latest evidence and were reviewed by leading experts and organisations. They replace previous guidelines and include important updates on diagnostic criteria and clinical practices.

For full details, check out the complete guidelines here: cutt.ly/HebbVLUr

🚨 Case Report: Four Strokes, A Missed Diagnosis, and a Lifesaving Discovery 🚨

A 66-year-old woman suffered from four strokes over two years, despite being on blood thinners. Doctors initially blamed atrial fibrillation, but it turned out she had (APS), which can cause blood clots and strokes. is usually seen in younger people, so it was overlooked at first.

After multiple treatments, the right diagnosis was finally made, and she was switched to a different type of blood thinner, which successfully prevented more strokes. This case highlights the need for thorough investigation when strokes keep happening, even in older adults.

If you or someone you know is dealing with unexplained strokes, it might be worth discussing APS with your doctor. Early diagnosis and the right treatment can be life-changing!

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Cincinnati Bearcats Football star defensive lineman Dontay Corleone is out indefinitely after being treated for blood clots in his lungs in June.

Corleone, a 6-foot-2, 320-pound junior and NFL prospect, was hospitalised after complaining of chest discomfort and shortness of breath. He is now home recovering with no timetable for his return.

"My hope is I will be able to return to football soon, but in the meantime, I will do everything I can to rehab and help the football program as a leader and mentor to our younger players," Corleone said in a statement released by the school. "I'm looking forward to being around the guys soon.”

So what are blood clots? And how do they affect athletes? Here's what to know.

Blood clots are semi-solid masses of blood cells, platelets and proteins that form in your veins and arteries. They help stem bleeding from injuries or surgery but can form for other reasons, such as certain medical conditions. Those blood clots can be life-threatening.

Blood clots are uncommon in young, healthy individuals, according to the National Blood Clot Alliance. And since athletes are usually young and healthy, doctors may not consider blood clots as a diagnosis, causing a delay in treatment.

Symptoms of a DVT in the leg can be misinterpreted as a torn muscle or sprained ankle, the alliance says. Likewise, symptoms of an embolism in the chest can appear to be a pulled muscle, asthma or pneumonia.

‼ Blood clot risk factors specific to athletes ‼

The blood clot alliance says several factors put athletes at an increased risk for blood clots, including:

▪️ Traveling long distances to and from a sports competition ✈️
▪️ Dehydration during and after a strenuous sporting event 💧
▪️ Significant trauma 🏋️‍♂️
▪️ Immobilization (brace or cast) 🦺
▪️ Bone fracture or major surgery 🦴
▪️ An inherited or acquired clotting disorder (factor V Leiden, prothrombin 20210 mutation, antibodies, and others) 🧬
▪️ A congenital abnormality of the anatomy of the veins, including May-Thurner Syndrome (narrowing of the major left pelvic vein)

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Stop the Clot

Blood clots sideline UC football's Dontay Corleone. What is a blood clot? Blood clots have benched Cincinnati Bearcats player Dontay Corleone indefinitely. What are they and how do they affect athletes?

Amazing news, this APS Support UK has been paid! Thank you to everyone who supports us through easyfundraising.org.uk - you're incredible! Want to get involved? Sign up for free and turn your online shopping at over 8,000 retailers into free donations for our cause! Sign up now: cutt.ly/UevuTqyd

🚨 New Research Alert: Sex-Based Differences in Blood Clotting Risks for Teens 🚨

A recent study reveals important differences in how blood clots (thromboembolism) develop in male and female teens. Researchers found that boys are more likely to experience serious types of clots like arterial thromboses, while girls are more prone to venous clots and .

Key Points:

▪ Boys: Higher risk of clots in arteries, brain, heart, and aorta.
▪ Girls: More common to have venous clots and lung clots (pulmonary embolisms).
▪ Risk Factors: For boys, congenital heart issues and surgery; for girls, factors like oral contraceptives, obesity, and .

This research highlights the need for tailored medical approaches based on s*x to better manage and prevent these conditions in adolescents. More follow-up is needed to understand the long-term impact.

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🚨 New Research on Antiphospholipid Antibodies (aPL) and Their Impact on Health! 🚨

Scientists are diving deeper into understanding antibodies (aPL), which are linked to serious health issues like , , and low platelet counts. Previously, it was thought these antibodies only targeted specific fats in our blood. But new findings show that aPL antibodies actually bind to protein-fat combos or the proteins themselves, especially ones like beta 2-glycoprotein I and prothrombin (cutt.ly/blood-tests). This could open up new ways to treat or manage conditions tied to these antibodies! 💉🩺

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We are very grateful to Paul Jones-Goldie, who shares his daughter Amber’s story about her (APS) diagnosis.

Paul says: “At 14, she is still quite young to fully understand the limitations that being on warfarin for the rest of her life imposes on her and the potential for further health complications. Our hope is that future research will identify a method of controlling APS without resorting to blood thinners.”

On October 13, 2024, Paul and his colleague James Hill will bravely take on a skydive to raise funds for APS Support UK, in honour of Amber.

They explain: “APS is a little known autoimmune disease that has huge ramifications on those affected. Amber will be on blood thinners her whole life in order to mitigate the ever present threat of blood clots forming. The hope is that, through research funded by your generosity, there will be a breakthrough in new treatments.”

Please join us in wishing Paul and James success with their skydive and consider donating to help them reach their £1,000 goal: cutt.ly/paul-and-james-fundraiser

Let’s thank Paul, Amber, and James for their incredible efforts to raise awareness of APS. You can read Amber’s full story here: cutt.ly/patient-stories