Antiphospholipid Syndrome: The Need to Support "Obama Care"

Antiphospholipid Syndrome:

Today’s blog is mostly personal, partly informative, and somewhat angry. My wife, we’ll call her “C” for the purposes here, was diagnosed with Antiphospholipid syndrome in 1993 after experiencing two spontaneous fetal abortions. We were lucky then to find out one of the doctors who discovered the syndrome in Boston currently worked at our hospital. We were both x-ray technologists there, and it turned out our Radiologist’s spouse was one of the first eight women studied in Boston, when the syndrome was named. He put us in contact with the doctor who knew more about the syndrome and pregnancy than nearly anyone else at the time. Long story short, nineteen years later, we have two healthy teenage boys eating us out of house and home. And yes, that is a good thing. 

However, the story does not end there. Antiphospholipid syndrome causes blood clots, preeclampsia (high blood pressure during pregnancy), rashes, heart valve problems, bleeding problems, movement disorders that make limbs sometimes jerk uncontrollably, cognitive problems like poor memory and dementia, sudden hearing loss, depression and psychosis. Additionally, it may cause strokes, sudden shortness of breath, chest pains, coughing up blood-streaked sputum, and swelling in the legs. To date, my wife “C” has experienced almost every known symptom, except stroke. 

“C” spent the last three days in the hospital because her platelet count, the clotting ability of blood, first got too thin and then too thick. Too thin and internal bleeding can develop where the blood literally leaves the body like water. Too thick, and the blood clots can cause a stroke and death. For three days, the hospital tried to regulate her blood. Eventually, the local hospital simply gave up, saying there was nothing more they could do, and sent her home with several vials of very expensive self-injectable drugs with instructions not to participate in dangerous activities like driving heavy equipment or playing full contact rugby. 

So what causes antiphospholipid syndrome? No one can say for certain why antibodies in the body do not normally attack growing fetuses in the human body. After all, a fetus is very similar to a tumor. Why does the body not simply send blood clots over the placenta feeding the fetus to kill it? With Antiphospholipid syndrome, it does. Women with this syndrome end up losing their baby unless they use proper medication to keep the blood clots from clotting the placenta. Similarly, in Antiphospholipid syndrome, the body mistakenly produces antibodies against the proteins, similar to fat in the bloodstream responsible for, and playing a key role in clotting the blood. These antibodies attack the binding proteins, the ones responsible for creating the weblike mesh that begins the clotting itself. That’s when the problems begin.

As the Mayo website points out, no one knows what the primary cause of Antiphospholipid syndrome is, but it is considered an autoimmune problem that may be caused by a number of things. Even so, it is likely passed on from generation to generation through carriers. The syndrome is most likely found in women, but men get it too. The carrier may not ever exhibit symptoms, or may produce any or all the symptoms. 

Complications may include kidney failure, strokes, cardiovascular problems, lung problems, pregnancy complications, false positive syphilis tests, hearing loss, dementia, blood clots throughout the body; bleeding from the mouth, nose, ears, rectum. Other problems include high blood pressure and fetal death. When combined with epilepsy, which may also be a part of the syndrome, the compounded problems make treatment extremely difficult because so many of the various medications needed to treat the syndrome counteract with one another. 

The problem is that most doctors only treat the symptoms of Antiphospholipid syndrome, and not the underlying condition or the patient in a whole body aggregate approach. Often times physicians do not know the syndrome is, that it exists, or how to treat the syndrome. Instead, they simply treat the individual symptoms and refer the patient to others to treat other symptoms. The over result of care is wanting. 

Today, we called the famous Mayo Clinic for a referral and help. We simply wanted someone, anywhere, who knew, understood, and could help “C” overcome the massive numbers of problems she is experiencing. “C”  no longer has private insurance because no company will cover her condition. After having both heart valves replaced and on so many medications, "C" is simply too expensive to cover. When the person at Mayo found out we lacked insurance, she said that she was sorry, but Mayo cannot help. She might have just as well of said, “We don’t take patients like you who are on public aid.” It was a slap in the face and a reality check. Even the famous Mayo Clinic is bound by money issues. Mayo no longer treat the most difficult patients unless they can pay the fees for treatment.  

For years, as an radiographer technologist, I had always heard, “If you want help and cannot find it where you live, contact the Mayo Clinic. They are the best in the world at helping people with serious medical issues and problems.” Today, I found out that may simply not be true. Simply put, if you have a serious medical condition and need help, but don’t have insurance, don’t bother calling the Mayo Clinic. 

If you are reading this and know of anyone specializing in Antiphospholipid syndrome who is willing to take on a difficult case, please comment. The syndrome is difficult to effectively treat, not well done documented, and not well known. Few physicians know much about it, and those who do, do not treat it as a specialty. 

For further information, please look up Antiphospholipid Syndrome on line. I am not a doctor and do not claim to provide any medical advice for anyone. However, if you have this syndrome, I hope you find someone who does help you, and not simply someone who pushes you off on the next physician, like so many in the Rockford, Illinois area, or like the Mayo Clinic who refused to even evaluate my spouse. 

Many people claim "Obama Care" will lead to socialism and socialized medicine. Given the choice between being treated for life threatening medical conditions without worry and not being treated because we cannot pay for the treatment and dying, I'll take "Obama Care" every day of every year of ever lifetime. I've seen first hand the British System of making sure their citizens are given the medical care they need. When compared to the United State's system of only providing medical care to those who can afford it, to that of the British system of taking care of everyone regardless of their ability to pay for long term care, I would much rather have the British system of medical care.