Antiphospholipid Syndrome
To make things even more confusing, this syndrome often goes by several different names - Molly's Fund
image by: Aps Antiphospholipid Antibody Syndrome Awareness
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Living with Antiphospholipid Syndrome
In 2012, I experienced a pain in behind my left knee that felt like someone put my skin and muscles in a vice-grip. I thought it was the recurrence of a running injury, and I decided to rest for the weekend. I soon experienced pain in my side that made it hard to breathe and impossible to lay down flat to sleep. It felt like the air was being slowly, but surely sucked from my lungs as more time passed. At the insistence of my primary care physician, I went to the emergency room, where I was diagnosed with a blood clot in my leg (deep vein thrombosis or DVT) and a life-threatening blood clot in my lung (pulmonary embolism or PE). I was admitted to the intensive care unit, where I stayed for…
Resources
A severe autoimmune condition may be triggered by 'good' gut bacteria
In experiments with mice, Kriegel’s team also found that, in animals genetically prone to developing APS, a dose of R. intestinalis could trigger the syndrome, with lethal outcomes. This all suggests that R. intestinalis can inadvertently trigger APS in people genetically predisposed to develop the syndrome, says Kriegel. “It could be that a bug that is beneficial for one disease is detrimental for another,” says Kriegel. A person’s genes and lifestyle could potentially influence which way the relationship will go. Read more: https://www.newscientist.com/article/2206861-a-severe-autoimmune-condition-may-be-triggered-by-good-gut-bacteria/#ixzz6vIPMFt5B
Scientists Have Uncovered the Likely Cause of a Serious COVID-19 Symptom: Blood Clotting
In their latest Science paper, the researchers found that the autoantibodies drive this cycle of inflammation and clotting. The autoantibodies found in the COVID-19 patients are the same ones doctors find in patients with an autoimmune disease called antiphospholipid syndrome, in which antibodies seed clots by attracting clotting factors that eventually block blood flow.
What it feels like… to have two strokes
One night, when I was 12 years old, I woke to a burning sensation in my head so painful, it felt like something was trying to tunnel its way inside. I opened my mouth to call for my parents, but no words came out.
Antiphospho What?
Other Names of APS...Hughes Syndrome, Anticardiolipin Syndrome, Lupus Anticoagulant Syndrome, Beta2Glycoprotien Syndrome, Sticky Blood, APS, APLS, LA Syndrome.
Recurrent Miscarriage: Hughes Syndrome Explained
Hughes Syndrome is one of the most common causes of recurrent miscarriages, but the good news is it's easily treatable.
The Day Life Changed
July 23, 2013, that is forever the day my life changed. Since that day I have felt like I was picked up and sat down into some random person’s life. It is almost like being dropped into a foreign land and expected to survive. I’ve had to learn a new language, medication names, medical terms, abbreviations. (R means Thursday folks! I learned that this week). 9 months, granted this journey started with my miscarriage...
A Patient’s Journey
Imagine a box of jigsaw pieces tipped out on the floor, all the bits are there, but to have a clear picture, I first had to put them all together to make sense. This was a journey that I was to take.
16th International Congress on Antiphospholipid Antibodies Task Force Report on Antiphospholipid Syndrome Treatment Trends
The management of APS is complex and challenging. The importance of the goal to provide optimal care is highlighted by the potentially severe and life-threatening complications that APS patients can experience, as a result of thrombotic, obstetric and non-criteria manifestations. The lack of clinical trials in APS patients necessitates empirical approaches to try to manage the multiple manifestations of this disorder.
EULAR recommendations for the management of antiphospholipid syndrome in adults
Clinical practice in APS is highly variable, in part because it is a rare disorder, and because knowledge about its diagnosis/classification, clinical spectrum and management is continuously advancing.
Top 10 points patients should know about the association between antiphospholipid antibodies and COVID-19
COVID-19 was initially thought to be primarily a respiratory infection. However, published studies, including autopsy reports of COVID-19 patients, suggest that the disease may cause other symptoms due to inflammation and damage of the lining of small vessels. This leads to small blood clots (microthrombi) in various organs. Similarly, in APS, blood clots are formed when the aPL bind to the vessel walls, causing inflammation and subsequent blood clots.
Antiphospholipid syndrome: an update for clinicians and scientists
Antiphospholipid syndrome (APS) is a leading acquired cause of thrombosis and pregnancy loss. Upon diagnosis (which is not made until at least one morbid event has occurred), anticoagulant medications are typically prescribed in an attempt to prevent future events. This approach is not uniformly effective and does not prevent associated autoimmune and inflammatory complications.
Calls to improve ‘sticky blood’ diagnosis
Earlier diagnosis and treatment of a common blood condition could prevent heart attack, stroke, DVT and miscarriage – delivering huge savings to the NHS. Yet patients with Hughes Syndrome continue to experience long delays in obtaining a test and often have to endure multiple miscarriages before referral is considered.
Miscarriages affect 1 in 6 pregnancies. We need better investigations and treatments
The main tests known to help include tests for obstetric antiphospholipid antibodies (the antibodies that make it hard for the placenta to develop), uterine abnormalities, and disorders of the thyroid gland.
New Developments in Antiphospholipid Syndrome (APS)
. Although it was originally described in lupus patients, it soon became clear that APS could also occur separately as a disease in its own right. This is called primary APS. The best way to think of lupus and APS is as two overlapping and closely related diseases. Thus there are many people who have both conditions at the same time.
Rivaroxaban Falls Flat in Antiphospholipid Antibody Syndrome
Clinicians need to be careful when considering rivaroxaban use in patients with this autoimmune disorder,
Living with Antiphospholipid Syndrome
The most important thing for me to remember is that although I have an illness that will never go away, I can still live a happy, healthy life. If you have been diagnosed with APS, you need to understand this too. APS is serious, and it is scary. An APS diagnosis can feel like the end of your life, and yes, it can lead to some serious consequences. There is no cure now, however, APS is manageable and treatable in most instances.
APS Support UK
We are the only UK charity dedicated to supporting anyone affected by APS, and aim to achieve earlier diagnosis and better treatment by raising awareness of the condition and helping fund research.
APS ACTION
APS ACTION is a network of internationally renown physicians and scientists that works to find a cure for Antiphospholipid Syndrome.
APS Foundation of America
The APS Foundation of America, Inc. (APSFA) is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks.
APS Foundation of Australia
A mission to raise awareness in a life threatening autoimmune condition called Antiphospholipid Syndrome (APS) here in Australia
Triumphant Wings
My Life with Lupus & Antiphospholipid Syndrome.
Life in the Fastlane
Anti-phospholipid syndrome (APS) is diagnosed by the occurrence of thrombosis or pregnancy morbidity in combination with detectable antibodies APS is caused by a heterogenous group of auto-antibodies directed against phospholipid binding proteins
National Heart, Lung, and Blood Institute
Phospholipids are found in all living cells and cell membranes, including blood cells and the lining of blood vessels. When antibodies attack phospholipids, cells are damaged. This damage causes blood clots to form in the body's arteries and veins. (These are the vessels that carry blood to your heart and body.) Usually, blood clotting is a normal bodily process. Blood clots help seal small cuts or breaks on blood vessel walls. This prevents you from losing too much blood. In APS, however, too much blood clotting can block blood flow and damage the body's organs.
MayoClinic
Antiphospholipid syndrome occurs when your immune system mistakenly attacks some of the normal proteins in your blood. Antiphospholipid syndrome can cause blood clots to form within your arteries or veins. It can also cause pregnancy complications, such as miscarriage and stillbirth.
MedicineNet
Patients with antiphospholipid syndrome have both blood clots and antiphospholipid antibodies that are detectable with blood testing. Antiphospholipid syndrome is also called phospholipid antibody syndrome, cardiolipin antibody syndrome, and Hughes syndrome in honor of the doctor who first described it.
MedlinePlus
Antiphospholipid syndrome is a disorder characterized by an increased tendency to form abnormal blood clots (thromboses) that can block blood vessels. This clotting tendency is known as thrombophilia. In antiphospholipid syndrome, the thromboses can develop in nearly any blood vessel in the body, but most frequently occur in the vessels of the lower limbs.
NHS
APS can affect people of all ages, including children and babies. However, it usually affects adults aged 20–50, and affects three to five times as many women as men.
NORD
In APS, antibodies mistakenly attack certain proteins that bind to phospholipids, which are fat molecules that are involved in the proper function of cell membranes. Phospholipids are found throughout the body. The reason these antibodies attack these proteins and the process by which they cause blood clots to form is not known.
Patient
The cause of APS is not known. Although aPL antibodies are clinically linked to APS, it is not known whether they are involved in pathogenesis, as up to 5% of healthy individuals have aPL antibodies. Proposed mechanisms for the hypercoagulable effect of aPL antibodies include complement activation, the production of antibodies against coagulation factors (including prothrombin, protein C, protein S), activation of platelets, activation of vascular endothelium and a reaction of antibodies to oxidised low-density lipoprotein.
Rheumatology.org
Antiphospholipid antibody syndrome (commonly called antiphospholipid syndrome or APS) is a recently identified autoimmune disease present mostly in young women. Those with APS make abnormal proteins called antiphospholipid autoantibodies in the blood. This causes blood to flow improperly and can lead to dangerous clotting in arteries and veins, problems for a developing fetus and pregnancy miscarriage. People with this disorder may otherwise be healthy, or they also may suffer from an underlying disease, most frequently systemic lupus erythematosus (commonly called SLE).
U.S. Pharmacist
Primary APS occurs in patients without clinical evidence of another autoimmune disease, whereas secondary APS occurs in association with connective tissue disorders, most commonly systemic lupus erythematosus (SLE), or another rheumatic or autoimmune disorder. About 50% of patients have the primary form of the disease.
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