10 Things to Know About APS

Shortly after I was diagnosed with blood clots, I was diagnosed with antiphospholipid syndrome, or APS. When my doctor gave me the news I was still in the hospital, and I had no idea how to say “antiphospholipid” let alone did I understand what it meant. I gathered from the concerned faces in the room – my doctor’s and my husband’s – that it was something horrible, but I was in too much pain from my blood clots to think much more about it at the time. It wasn’t until I got home from the hospital and started looking online that I learned more about this disease. What I found out scared me.

Antiphospholipid syndrome is an autoimmune disease in which your blood clots abnormally because your body mistakenly produces antibodies that attack phospholipids, a type of fat that plays a key role in clotting. It can lead to an increased risk for blood clots, like the DVT and PE that I experienced. It can be called lupus anticoagulant, antiphospholipid antibody syndrome, or Hughes syndrome (primarily in Europe). APS can be different for everyone. Some people do not experience blood clots, and some people have ongoing, or serious, health complications like stroke or heart problems. Some people even carry these antibodies in their blood, but they never cause an issue.

There is no cure for APS, but there is treatment, which usually involves preventing recurrent blood clots with an anticoagulant. If you have been diagnosed with APS, it is critical that you get connected with a doctor who understands this disease, and who can help determine what the best treatment is for you. An APS diagnosis is frightening and overwhelming, but it is also manageable. It’s important to learn about it, and connect with people who understand, such as a knowledgeable doctor or medical team, and people who share your experience.

Here are ten things I wish I knew from the start:

1. APS is an autoimmune disease, but it’s not the same as lupus.

Lupus and antiphospholipid syndrome share many traits, but they are not the same disease, due to the antibodies that are present. Like antiphospholipid syndrome, lupus is an autoimmune disease. It’s likely that lupus results from a combination of your genetics and your environment too. About 50 percent of people with lupus do have antiphospholipid antibodies (Source: Johns Hopkins).

2. APS affects women more than men, and it is a major cause of recurrent miscarriage and pregnancy complications, when no other issues are found.

Women are generally more affected by antiphospholipid syndrome than men, but it can still happen to anyone. If you are a female who has struggled with recurrent miscarriages or stillbirths for no apparent reason, it might be a good idea to touch base with your doctor about whether or not APS is something you need to be concerned about or investigate further.

3. There is specific criteria to diagnose APS, and just because a person has the antibodies, does not mean he or she has antiphospholipid syndrome.

There are three blood tests that are used to diagnose APS: lupus anticoagulant, anticardiolipin, and anti-B2 glycoprotein I. These blood tests detect abnormal proteins – also called antibodies – in the blood. If APS is suspected, a person is usually tested using all three of these blood tests, because each test individually cannot detect all of the antibodies. At least one of these tests must prove positive and be confirmed on two occasions, no less than three months apart. Certain clinical criteria must also occur to confirm an APS diagnosis, such as one or more miscarriages, or a clotting event (Source: APS Foundation of America, Inc.).

Positive tests results without a blood clot, for example, does not mean a person has this disease. There are people who have the antibodies, but they do not have antiphospholipid syndrome. Diagnosis of APS can be complicated, so it is best to talk to your doctor about your individual situation.

4. APS can cause many other health problems.

Depending on if, and which, organs are affected by restricted blood flow due, usually from blood clots, and for how long, antiphospholipid syndrome can cause significant, or even permanent damage. These complications can include kidney failure, stroke, cardiovascular problems (heart damage, circulatory problems), lung problems (pulmonary hypertension and PE), and pregnancy problems (miscarriages and stillbirths).

In very rare cases, APS can progress to a chronic state known as catastrophic antiphospholipid syndrome (CAPS), which can cause widespread organ failure, and even death.

5. There are risk factors for APS.

A person’s own immune system causes antiphospholipid syndrome by producing antibodies that attack healthy cells, but doctors aren’t really sure why. These antibodies may be triggered by an environmental factor, such as an infection, that occurs in an individual who has a genetic background that makes him or her more susceptible to the disease. The exact genetic component of APS is, however, unknown at this time (Source: American College of Rheumatology).

6. There are signs and symptoms of APS.

There are symptoms of antiphospholipid syndrome, but sometimes, these symptoms can also be a result of other health concerns, which is why APS can be difficult to detect. Some of the symptoms include blood clots (DVT and PE), multiple miscarriages or stillbirths, stroke, transitory ischemic attack (TIA, or “mini” stroke), rash or skin ulcers, neurological problems (chronic migraines, headaches, or even seizures), cardiovascular problems (damage to heart valves), and bleeding (decrease in platelets, which can make symptoms hard to detect). (Source: APS Foundation of America, Inc.)

7. Prompt and accurate diagnosis of APS is very important.

Just like blood clots, timely and accurate diagnosis of APS is very important. The sooner a person is diagnosed with antiphospholipid syndrome, the sooner he or she can begin a treatment plan to reduce or eliminate symptoms of the disease. Connecting with a specialist, like a hematologist or rheumatologist, is important to diagnose and treat APS, because it is a very specialized, and sometimes complicated, disease. You can read more about how prompt diagnosis and treatment helped to save my life here.

8. There is no cure for APS, but there is treatment.

Medications, like anticoagulants, can reduce your risk for blood clots, and as a result, many of the problems that can occur has a result of blood clots. Generally speaking, APS patients are treated with the oral anticoagulant warfarin, or injections of heparin or low molecular weight heparin. Sometimes, people with APS also take an antiplatelet drug, like aspirin, to reduce their risk for stroke (Source: The National Blood Clot Alliance).

It’s important to address any risk factors for blood clots, such as estrogen for birth control or the treatment of menopause symptoms, obesity, or smoking. It’s also important to address general health concerns like diabetes, other autoimmune disorders, high blood pressure, and high cholesterol.

APS antibodies can come and go, but once a person has been diagnosed with the disease, they always have the disease. Treatment plans can vary from individual to individual, so make sure you are working with your healthcare team to ensure the best treatment possible for your situation.

9. There is still a lot to learn about APS.

Doctors – and patients – know more about antiphospholipid syndrome than we used to, but there is still a lot to learn, particularly about where APS comes from and why. Another important area of study is to what extent new oral anticoagulants, or factor Xa inhibitors, are effective at preventing recurrent blood clots in patients with APS.

10. APS is serious, but it is manageable, in most cases.

For many people, treatment of APS is not very different than treating blood clots, and management of the disease is often focused on managing recurrent symptoms. Taking a blood thinner like warfarin, though, can result in lifestyle changes that are sometimes difficult for patients to undergo. As new advances in technology and treatment emerge, I hope that we can one day find a way to cure or repress this disease.

There is hope for healing, and you are not alone.

 

 


Reader Writes In: What’s one thing you wish you knew about antiphospholipid syndrome when you were diagnosed?


Read more about how I live with antiphospholipid syndrome.


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

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 several days as doctors worked to stabilize my situation and waited to see what would happen. When I eventually went home, I faced an extended recovery period that was unlike anything I ever expected.

In a lot of ways, blood clots were just the beginning for me. Shortly after I was diagnosed with DVT and PE, I was also diagnosed with antiphospholipid syndrome, or APS. It is an autoimmune condition in which your blood clots abnormally because your body mistakenly produces antibodies that attack phospholipids, a type of fat that plays a key role in clotting. APS – and to a lesser extent hormonal birth control – was to blame for my blood clots.

It was early June, and since June is APS Awareness Month, my internet searches revealed quite a lot of information about this disease, although it still seems like there is still more to learn. APS affects women much more than it does men, and not a lot is known about how a person acquires it. It is believed to be triggered by an environmental factor, such as an infection in an individual with a genetic makeup that makes him or her more susceptible to the disease, or from an autoimmune condition, like lupus or Sjogren’s syndrome.

Doctors don’t know why I have APS, or why it triggered such extensive clotting in my body. Some people with APS do not develop blood clots at all, however, antiphospholipid antibodies are present in 15 – 20% of all cases of DVT, and in one-third of new strokes occurring in people under the 50 years old (Source). In women, antiphospholipid antibodies can be a major cause of recurrent miscarriages and pregnancy complications. APS can also lead to numerological symptoms like chronic headaches and migraines, heart disease, and bleeding as a result of low platelets, which is another problem that I have encountered. In very rare cases, excessive clotting can lead to widespread organ failure and what is known as catastrophic APS, or CAPS. There is no cure for APS to date, and even though the antibodies can go into remission, the disease never goes away.

I don’t often think of myself as living with a chronic, or long-term disease, but in reality, that is what I am doing. I am fortunate that APS has not caused any additional problems for me, but there are ongoing concerns about my blood’s increased tendency to clot. As a result, my treatment involves taking anticoagulants, or blood thinners, for the foreseeable future, along with some other supplements to maintain the health of my blood, including folic acid, vitamin k, and iron. I also take aspirin, an antiplatelet, to help prevent stroke. I take the blood thinner warfarin, which is the only suitable treatment for me at this time, so I have to get my blood’s PT/INR monitored regularly through vein draws at my doctor’s office to make sure my medication is working properly. Depending on how I am doing, I could have my PT/INR monitored weekly, or every few weeks, it just varies. One thing is for certain though, with warfarin, I can never stop monitoring my blood to ensure its effectiveness, and my safety.

Antiphospholipid syndrome, and blood clots, have changed my life in a lot of ways. I go to more doctor’s appointments and manage my treatment to the best of my ability, which can be time consuming. Managing APS is often the same as managing my future risk for blood clots. I need to take my medication as prescribed and stay in communication with my healthcare team about any changes in my body, or any new concerns I have. I need to talk to my doctors and take precautions if I have surgery or am hospitalized, plan a pregnancy, or become pregnant. I need to remain vigilant for signs and symptoms of blood clots, stroke, and heart disease, and try to make or maintain the lifestyle changes that promote health and happiness, such as eating well, hydrating well, exercising on a regular basis, and making time to de-stress and relax.

Living with APS can also be challenging emotionally, and there are times when I struggle with that more than the physical care I undergo. I sometimes worry about the long-term repercussions of having this disease, and wonder what, if anything, might happen next. Will I wake up one day and have a stroke? Will my heart fail me? Will APS lead to another complication that is not so manageable? I wonder why I got APS in the first place, and I wonder if I could have done something to prevent it, before it led to life-threatening blood clots. It can be hard to overcome these thoughts, and they can bring me down, especially when I am overwhelmed and facing stressful situations, or when I have concerns about something my body might be trying to tell me.

I manage my feelings about living with APS in two ways. One, I have an excellent medical team, including a hematologist, who manages my ongoing care. I get blood work done about every three months to monitor for additional problems, or concerns. I see my doctors regularly for follow-up appointments, and I do not hesitate to call if I have a problem in-between those appointments.

Second, I try to be positive about what I have been through, and where I am going. APS is different for everyone, just like blood clots, and my experience will not be the same as the next person’s experience. If DVT and PE are the worst complications I experience as a result of antiphospholipid syndrome, I know that I have already survived the worst. I continue to hope that perhaps the worst really has come and gone, and each year that I do not have another complication, my hope continues to grow.

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. Make sure you have a specialized medical team, or doctor, and make sure you learn as much as you can about antiphospholipid syndrome. Take care of yourself to the best of your ability, and if you’re struggling to process your diagnosis or treatment, talk to a professional who can provide you with strategies and coping tools for managing chronic illness.

Where to Go for More Information

There is hope for healing, and you are not alone.

 

 


Reader Writes In: Do you have antiphospholipid syndrome or another clotting condition? Share your story in the comments below.


Read more about antiphospholipid syndrome on my blog.


You are not alone. Connect with the private BCRN Facebook community for more inspiration and encouragement.

Roadmap to Health in 2015

roadmap to health 2015

For many of us, myself included, 2014 was a tough year healthwise. While it was nothing the year of my PE, I’ve faced some new challenges that were unexpected. I know many of you share in my struggle and still many more are battling the aftermath of a DVT and/or PE for the first time. You are not alone in your fight, as evidenced by the stories and people here – both those people who have shared their stories and those who are suffering quietly. Your journey may be one you take by yourself, but you are not alone in the obstacles, setbacks, hardships and even triumphs you encounter. We are all on the same type of journey, just taking different paths to get there.

Where is there, you wonder. For me, my journey is seemingly unending, but I am hoping to continue down a path that leads to optimal health and wellness for my individual body. I was diagnosed in 2012 with Antiphospholipid Syndrome, which is believed to be the main cause behind my DVT and subsequent PE. I take Coumadin/warfarin daily and probably will for the rest of my life as there is currently no cure for APS; and my risk of future clotting, including stroke, is too great to risk without medication at just 32 years old. Do I like that I take blood thinners now or forever? No, but it is the best course of treatment at this time. My journey includes continuing to work with my hematologist to ensure I am receiving the best care possible, regain control of my diet and start implementing a not only doable, but sustainable fitness plan back into my daily life.

Achieving ultimate health is like any other journey – full of hills, bumps, detours, closures and even spin-outs along the way. If we’re lucky (which, let’s face it, I’m not), we’ll avoid any major crashes along the way and have to deal with just the occasional stall or engine failure. I like to think of health as a journey and I would like to provide you with a Roadmap to Health in 2015.

Roadmap to A Healthy

Print it out, share it, bookmark it for future reference. Do whatever you can right now to take control of your health.

From me to you, have a very happy holiday season and beautiful New Year.

Reader Writes In. What is included in your Roadmap to Health in 2015? Share it in the comments below!

There is hope for healing and you are not alone,

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Thank you to the American Recall Center for providing this Infographic and the opportunity to include my own insight. Connect with ARC on Facebook today.

March: Blood Clot Awareness Month

I seem to have always known blood clots were a serious health concern – especially if you had one in your heart, lungs or brain. I heard about them in the general sense; for example, when discussing the elderly who had passed away or when talking about recovery from a major surgery or hospitalization. I didn’t know the signs or symptoms; that fatality from a blood clot could happen within moments of the first symptoms; or that it would ever happen to me at 29 years old and as an active runner. I thought I had a simple running injury and if I had known the symptoms, it may have made the difference between a treatable Deep Vein Thrombosis (DVT), behind my left knee, and the Pulmonary Embolism (PE) that went to my lung and almost killed me. It was nearly two days since my calf started to hurt until I went to the Emergency Room, breathless and in excruciating pain, both in my leg and side. I couldn’t believe the extent of the injury to my body, mind and emotions. It completely changed my life – no aspect was left untouched. And the thing is, other people – like me and unlike me – don’t know or don’t think it can happen to them. March is Blood Clot Awareness Month and as a blood clot survivor, I am doing everything I can to spread awareness about this deadly and often treatable injury.

I know they majority of people I know do not understand what I went through during my PE and recovery. They do not understand my physical pain and how I could look okay in spite of it. They do not understand that I took almost a month before I could even breathe without the assistance of an oxygen tank and how I went from running several times a week to not even being able to walk from one room to another. They do not understand how I could not use the bathroom by myself in the hospital, that I was in a hospital room well-equipped for medical personnel to take life-saving measures at a moment’s notice or that I couldn’t even sit up for days on end. They do not understand how my personal relationships, professional life and self-confidence suffered, some to irrevocable ends.

I attribute most of this to the fact that many people simply do not understand blood clots and the damage they cause to the body. People understand what it means to have a heart attack, stroke or cancer, but they do not often understand what it means to have a blood clot. They also do not understand that it could happen to them. I am trying to change that and help spread awareness not only for Blood Clot Awareness Month, but always. Consider this post a crash-course in blood clots and while it is in no way all-inclusive, I hope to present to some useful information for you or others you may know who don’t understand what happens when a person has a blood clot. Share it, print it or post it! Let’s get the word out about this silent killer.

Just the Stats

  • Blood clots (DVT and PE) affect am estimated 900,000 Americans each year (Source).
  • Blood clots (DVT and PE) kill an estimated 300,000 Americans each year. The number of deaths from blood clots  exceeds those from breast cancer, AIDS,and motor vehicle accidents combined (Source).
  • Blood clots are a leading cause of preventable hospital deaths in the United States (Source).
  • Blood clots are the leading cause of maternal deaths in the United States (Source).
  • 1 in 3 people who are diagnosed with PE will die.
  • In 25 percent of people who experience a PE, the first symptom is sudden death.
  • One person every minute will be diagnosed with DVT in the U.S. One person every six minutes will die from a PE in the U.S. (Source)
  • 10 to 30 percent of people affected by DVT/PE will die within one month of diagnosis.

The Facts

Who…
  • Can get a blood clot? Anyone can develop a blood clot for a variety of reasons. There are many risk factors that increase your risk for a blood clot (see below for more detail). In a nutshell, you are at increased risk if you or a close family member have had a blood clot before; you have had recent major surgery; you have an inherited clotting condition; have cancer; are immobile for a long time (confined to bed, long-duration plane or car trip, etc.), or use birth control pills. It’s important to understand your own personal risk and also that anyone can develop a DVT at any time.
  • Most commonly treats a blood clot? Patients commonly see their general practitioner for treatment of a blood clot, but can also see a pulmonologist, cardiologist or hematologist. A hematologist is best equipped to handle ongoing care particularly if the patient has a clotting factor or other blood condition/disease contributing to the blood clot.
What…
  • Is a DVT? DVT (short for Deep Vein Thrombosis) is a type of clot that forms in a major vein of the leg or, less commonly, in the arms, pelvis, or other large veins in the body.
  • Is a PE? DVT can develop into PE (short for Pulmonary Embolism), a dangerous condition in which the clot detaches from its point of origin and travels through the bloodstream to the lungs, where it becomes stuck and prevents blood flow.
  • Causes a blood clot? Blood clots may form when either the flow of blood in a vein slows, damage to a vein occurs, or the blood is more clottable (such as with a genetic or autoimmune factor already in the body/blood).
  • Is a blood thinner? Also called an anticoagulant, a blood thinner helps to prevent clots from forming in the blood. They include medicines like aspirin, clopidogrel or Plavix, Warfarin — more commonly known as coumadin — and a variety of other medications that are used in the hospital setting, including injections like Heparin and Lovenox.
  • Happens after someone is diagnosed with a PE/DVT? Often times, a person is admitted to the hospital, especially if he or she is experiencing a PE. They are usually put through a variety of blood and imaging tests to check for high blood clotting factors in the blood (D-Dimer) and actual blood clots (Dopplar Imaging scan). Patients are usually put on blood thinners of some sort as soon as possible. Patients are often treated with pain reliving drugs and sometimes surgery is performed to remove the clot or place a filter to stop the clot from moving (usually in the groin), but these procedures are not always performed.
  • Does it mean if someone has a clotting factor? If someone says they have a clotting factor, it usually means they have a genetic (an example would be Factor V Leiden ) or autoimmune (an example would be Antiphospholipid Syndrome) mutation or condition that causes their blood to clot when it should not.
Where…
  • Can you develop a blood clot? You can develop a blood clot anywhere you have veins, but they are most commonly in the leg and less commonly in the arms, pelvis or other large veins of the body.

Why…
  • Is a blood clot so damaging? A blood clot is damaging because, depending on it’s path, it can cause great trauma to the body’s circulatory system, including the heart. It takes time and energy for the body to heal damage done to the heart and lungs, even if it is micro-damage. A PE is consider a traumatic event for a person’s body to go through.
  • Isn’t there more public awareness about DVT/PE? A lot of times blood clots are not named as the cause of death because a person may have also suffered from underlying conditions, such as cancer. There seems to be more public energy focused on educating people about heart disease, diabetes and cancer, yet organizations like the National Blood Clot Alliance (Stop the Clot) and Clot Connect are making great strides to raise awareness. More recently celebrities such as NACAR’S Champion Driver Brian Vickers, 2010 Olympian, and two time US Sprint Champion, and a Master Sprint World Champion in Speed Skating Rebekah Bradford and Reality TV Star NeNe Leakes have spoken out about their personal encounters with blood clots to help bring awareness to the public.
How…
  • Long does it take for someone to recover from a DVT/PE? Recovery from a DVT and/or PE varies greatly from individual to individual and can take anywhere from several weeks to a year or more. Some people will face complications from DVT, including Postthrombotic Syndrome (PTS) for the rest of their lives.
  • Can I prevent a blood clot?  The good news is, yes, there are many things you can do to help prevent a blood clot. Stay active. Immobility increases the risk of developing clots. If you’ve been sitting for a long period of time (such as at your desk or while traveling) stretch your legs often; Maintain an ideal body weight; Know your risk factors for developing a clot (see below) and discuss with your doctor; Know your family medical history; If you are hospitalized or planning for surgery, ask your about what will be done to prevent blood clots (such as being placed on blood thinners or wearing anti-embolism, also called compression, stockings).

Did you know?

  • One-half of clot patients will have long-term complications and one-third will have a recurrence within 10 years (Source).
  • An estimated $10 billion in medical costs in the US each year can be attributed to DVT and PE (Source).
  • Blood clots are a treatable condition and often preventable condition.

You may want to know

  • A PE is sometimes called a “heart-attack of the lungs.”
  • Deep red is the awareness ribbon color for blood clots, including DVT.
  • Red and white (together) is the awareness ribbon color for PE.
  • Burgundy is the awareness ribbon color for clotting disorders.

DVT (and subsequently PE) risk factors include

  • Hospital stay
  • Major surgery such as abdominal or pelvic surgery
  • Knee or hip replacement
  • Major trauma such as an auto accident or fall
  • Nursing home living
  • Leg paralysis
  • Older than 65 years
  • Trips over four hours by plane, car, train or bus
  • Active cancer or chemotherapy treatment
  • Bone fracture or cast
  • Birth control pills, patch or ring
  • Hormone replacement therapy
  • Pregnancy or a recent birth
  • Prior blood clot or family history of blood clots
  • Heart failure
  • Bed rest over three days
  • Obesity
  • Genetic/hereditary or acquired blood clotting disorder

Symptoms of a DVT

  • Swelling in the affected leg, including swelling in your ankle and foot.
  • Pain in your leg; this can include pain in your ankle and foot. The pain often starts in your calf and can feel like cramping or a charley horse. It won’t go away with regular stretching, massaging or rest.
  • Warmth over the affected area.
  • Changes in your skin color, such as turning pale, red or blue or purple.
  • You need to know in about half of all cases, deep vein thrombosis occurs without any noticeable symptoms.

Symptoms of a PE

  • Unexplained sudden onset of shortness of breath
  • Chest pain or discomfort that worsens when you take a deep breath, cough or even lie down
  • Feeling light headed or dizzy, or fainting
  • Rapid pulse
  • Sweating
  • Coughing up blood
  • A sense of anxiety, nervousness or impending doom

What to do if you think you have a DVT

If you are at all concerned or have any of the symptoms listed above, make an appointment with your primary care physician or visit your local emergency room.

What to do if you think you have a PE

PE is life-threatening, seek emergency medical care immediately or call 9-1-1.

Also visit

There is hope for healing and you are not alone,

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What is Antiphospholipid Antibody Syndrome?

What is APS Cover

June is Antiphospholipd Antibody Awareness Month. But, what is Antiphospholipid Antibody Syndrome, anyway?

If you’ve never heard of Antiphospholipd Antibody Syndrome (or APS), you are not alone although, the disease is not as uncommon as you may think – as people are tested for different blood clotting disorders after a clotting incident, more and more people are being found to have APS. Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women and while APS is believed to be responsible as the cause of multiple miscarriages, thrombosis, young strokes (up to one third of people under 50) and heart attacks, it is rarely discussed as a relevant health issue, particularly for women. Still, just about 1% of the U.S. population is believed to have APS making it a rare and sometimes ignored condition.

So, what is it exactly? Antiphospholipid Antibody Syndrome is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. Antibodies are proteins in the blood and body fluids that bind to foreign invaders like bacteria and viruses and help the immune system destroy and remove them. Sometimes the immune system doesn’t function properly and makes antibodies against normal organs and tissues in the body or, in the case of APS, proteins in the blood. There are two known forms of APS. APS may occur in people with systemic lupus or other autoimmune disease, or in otherwise healthy individuals (Source: http://apsfa.org)

In people with APS, blood basically clots when it shouldn’t creating the potential for serious side effects such as DVT, PE, heart attack, stroke, aneurysm, etc. Women with APS may have difficulties with pregnancy. During pregnancy, women are at higher risk of developing blood clots and preeclampsia (high blood pressure). In APS, pregnancies are often lost because blood clots form in the placenta and starve the baby of nutrition. Some women may have trouble getting pregnant, while others may experience repeated miscarriages. Blood clots that develop in the placenta can cause fetal growth problems, fetal distress, premature birth, or pregnancy loss. Expert care and close monitoring of the pregnancy is essential by a doctor knowledgeable about APS or high-risk OBGYN (Source: http://apsfa.org).

APS is a lifelong disease, of which there is currently no cure. In general patients who have had a blood clot (i.e., stroke, heart attack, DVT, PE) and have persistently positive tests for antiphospholipid antibodies should be treated with anticoagulants (such as Warfarin) indefinitely. Discontinuing treatment after a fixed period of time, such as six months, is common after a clotting incident, but may be quite dangerous in APS patients. In some patients with a history of blood clots, antiphospholipid antibodies may disappear after a certain period of time, making them hard to detect during routine lab tests. It is not known whether it is safe to stop anticoagulation in this situation of transient antibodies. Consultation with a doctor experienced in treating APS, often a hematologist, is recommended for the treatment of APS (Source: http://apsfa.org).

APS is not only a difficult disease to understand, but difficult to explain to others as well. A person with APS may look exactly like they did before – on the outside. But, he or she is struggling internally with a disease that always has the potential to cause serious and life-threatening complications. That is not to say people with APS have to stop living normal lives, it just means they must be aware of what is going on in their body including paying attention to symptoms of potential blood clots, taking medication regularly as prescribed, following up with a doctor or specialist as recommended and taking care of oneself.

In terms of autoimmune diseases, APS is actually one of the more common ones, but is often not tested for or misdiagnosed by physicians. If you have suffered a clotting incident, please make sure the hospital (or your doctor) checks for things like autoimmune and hereditary clotting factors.

I was diagnosed with APS after my PE, thanks to the persistence of one hematologist who would not settle for birth control being the only contributor to my blood clots. After my diagnosis, I remember being very confused and unable to comprehend what the doctor was telling me. As time has gone on, I have found connecting with others has been the most valuable form of healing for me. I have also sought out as much information about APS as I can and while resources are limited at the present time, there are some organizations out there dedicated to raising awareness and spreading information about APS and other blood disorders. You can find my list of helpful resources below-

Resources for People Diagnosed with APS

  • APS Foundation of America, Inc. – Founded in 2005, 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).
  • Antiphospholipid Syndrome Facebook Support Group – Antiphospholipid syndrome (or antiphospholipid antibody syndrome) (APS) is a disorder of coagulation, which causes blood clots (thrombosis) in both arteries and veins, as well as pregnancy-related complications such as miscarriage, preterm delivery, or severe preeclampsia. The syndrome occurs due to the autoimmune production of antiphospholipid antibodies (aPL). The name Antiphospholipid Syndrome is a misnomer because the target antigen of aPL is not phospholipids but actually plasma proteins that bind to phopholipids (eg: [[β2-glycoprotein 1]] or prothrombin). This is an open support group where we come together to talk about it.

Share your story. Have you been diagnosed with APS? Have you ever heard of APS? What is most troubling or interesting to you about the disease? Has APS changed the way you live your life?

There is hope for healing and you are not alone,

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