By Shannon Farr
Two Fairchance sisters with a blood-clotting disorder suffered through years of misdiagnoses along with disabling symptoms and the indignity of being told repeatedly their problems were all "in their head."
Robin Gibson, 45, and her sister, Darla Pardo, 43, were recently diagnosed with antiphospholipid antibody syndrome, or APS.
"Because of the disorder I had a stroke in my brain and lost a lot of my vision," Gibson said. She is no longer able to drive a car because of her poor vision.
Gibson and her sister have suffered recurring symptoms since childhood.
Symptoms include seizures and complications from holes in the heart valve.
APS causes vein and artery blood clots, multiple miscarriages and strokes in many people, said Dr. Thomas Ortel, of Duke University in Durham, N.C.
He specializes in hematology, has treated hundreds of patients with blood-clotting disorders. Ortel is researching the genetically inherited characteristics associated with APS.
When Gibson suffered her first stroke, it was misdiagnosed as a migraine and she was sent home to begin aspirin therapy.
The disease is often misdiagnosed as a migraine, potassium deficiency or depression, said Christina Pohlman, 35, co-founder of APS Foundation of America Inc. She was diagnosed with APS six years ago after years of being misdiagnosed.
More women than men suffer from the syndrome, Pohlman said.
Gibson suffers from acute renal failure, and she blames doctors for her and her sister's prolonged suffering.
"Most people are told that it's in their head when they go to the doctor to get help," Gibson said.
APS is detected through blood tests and scanning the body for clots, said Dr. Gale McCarty, associate staff member at Georgetown Hospital in Washington. As a specialist in rheumatology and immunology, she introduced APS research at the hospital in 1982.
"The syndrome is horribly underdiagnosed," McCarty said.
"Half of the 1.5 million lupus patients nationwide suffer from APS and many more are not diagnosed yet," Pohlman said.
APS affects each person differently. Some will have the syndrome by itself, while others will suffer from related disorders as well.
"Robin struggles to keep in step with her everyday routine and continues to suffer from strokes," Pohlman said.
Gibson's sister, Pardo, is in The Uniontown Hospital in Uniontown struggling with blood clots, kidney failure, liver disease and intensive heart disease, Gibson said. All of the health ailments are associated with APS.
"It's a balancing act that really makes you keep your life in check," Pohlman said. "You could have a stroke at any time."
The number of people who have the syndrome is unknown, said Sarah Church, informational specialist at the Genetic and Rare Disease Information Center.
"When I was first diagnosed, I felt like I was the only person in the world with the disease," Pohlman said.
There's not enough people in her area with the disorder to start a support group.
People around the nation are pulling together to hold conferences, visit doctors, create a quarterly handout, and chat on-line with people who may have the disease, Pohlman added.
The theme of the June APS awareness month is "Get in the Flow."
http://www.pittsburghlive.com/x/pittsburghtrib/s_515444.htmlSisters' ailment identified By Christy Murdoch , For the Herald-Standard
Sisters Darla Pardo and Robin L. Gibson display a variety of medications. After suffering symptoms for years, the two have been diagnosed with the blood-clotting disorder Antiphospholipid Antibody Syndrome.
After years of suffering from mysterious health problems, Robin L. Gibson and her sister, Darla Pardo, both of Fairchance, were finally diagnosed with Antiphospholipid Antibody Syndrome (APS), a serious blood-clotting disorder that can have devastating consequences.
Because of their struggle with the disease and their difficulty receiving a diagnosis, the sisters agreed to tell their story to educate the public and the medical community about APS. Their goal is simply to prevent others from suffering the way they have.
Gibson explained that APS is a blood-clotting disorder that causes the blood to be thicker than normal.
The main feature of the disorder is the development of blood clots that can occur at any time and can be fatal. She said it has been referred to as "sticky blood" syndrome.
"My sister and I have suffered for years with the disorder, but the doctors couldn't find a reason," Gibson said. "Some suggested that our problems were because of lifestyle. Others thought we suffered from anxiety and depression and prescribed antidepressants."
Gibson's clots are in the arteries, and Pardo's are in the veins.
"My doctor says I am a ticking time-bomb," Gibson said.
When the clots are in the arteries, Gibson said the consequences can be more immediate because the arteries carry blood to the major organs, such as the heart, lungs and brain. However, either condition is dangerous and serious.
Gibson, who is now 45, said her symptoms started when she was in her early 30s. She suffered headaches, left-sided numbness and occasional vision loss. She was initially diagnosed with migraine headaches.
When similar symptoms continued, Gibson was then diagnosed with transient ischemia attacks (TIAs), which in laymen terms are known as mini-strokes.
Although it was odd for a young person to suffer from TIAs, Gibson said the doctors were perplexed, but they weren't aware that there could be an underlying cause.
Eventually, Gibson suffered three strokes, leaving her with permanent body weakness, vision loss and impaired cognitive problems, such as some memory loss and confusion.
Gibson was diagnosed about 18 months ago. Her diagnosis prompted further investigation into Pardo's condition.
Both sisters now receive the appropriate treatment for APS, which is anticoagulant therapy (blood thinners), such as Coumidin or Lovenox.
Some people who test positive for elevated antibodies, but have no clinical signs or symptoms, may be treated with aspirin, making the formation of clots less likely.
Gibson said she is happy to finally have a diagnosis and to be receiving proper treatment.
"Having APS has been life-changing," Gibson said. "I was very active. It has robbed me of so many things I love to do.
"It is my hope that APS becomes more known, so others receive an early diagnosis and do not lose quality of life at a young age," she added.
It is believed that 1 to 5 percent of the population has APS, and it is a major women's health issue, according to the APS Foundation of America Inc. Web site. About 75 to 90 percent of those affected are women.
Gibson and Pardo were told that their children should be tested for the condition.
The Web site described APS as an autoimmune disorder like lupus and multiple sclerosis. APS may even coincide with those types of autoimmune conditions. The disorder is not well recognized, even within the medical community.
According to the Web site, the features of the syndrome are the development of conditions such as stroke, heart attack, pulmonary embolism and neurological cognitive problems. Therefore, physicians can miss the underlying cause and fail to order the appropriate tests for a proper diagnosis.
The human immune system fights infections by producing antibodies in the blood that bind with foreign invaders, like bacteria and viruses, and destroys and removes them, the Web site said.
According to the Web site, in autoimmune conditions such as APS, the immune system malfunctions and makes antibodies against normal tissue and organs.
These antibodies are called self-reactive and cause damage to the normal function of blood flow. The targets of the self-reactive antibodies are B2-glycoprotein 1 and prothrombin. The condition is diagnosed by assessment of clinical symptoms and laboratory blood tests.
The goal of the APS Foundation of America is to raise awareness and educate both the public and the medical community. For more information on APS, visit online at
http://www.apsfa.org http://tinyurl.com/28zk28
Orangeville, Ill. — The “silent disease” almost killed her. For years, she was misdiagnosed. Many doctors accused her of making up her symptoms. She was referred to as a “psych patient.” She is a nurse. She worked at a clinic. She knew her own body. But she couldn’t get anyone to take her seriously.
Sue Henze-Yeagle, 42, of Orangeville is now disabled. She can no longer work as a nurse. She must walk with a cane. Her left arm suffers from tremors. Without medication she will die. She almost did last year. She suffered a stroke while at work in Rockford. The date was April 10, 2010. It was a day that changed her life forever.
The neurologist at the time sent her home with a diagnosis of migraine. She could not walk and talk. A friend video taped her. Her speech was slurred. Her left side was totally affected. A friend suggested she see a doctor at FHN in Freeport. Henze-Yeagle met with neurologist Dr. Farouk Khan. Khan did a battery of tests. CAT scans and MRI tests showed lesions on the brain. Henze-Yeagle was told she had a stroke. Her diagnosis was antiphospholipid antibody syndrome (APS). Simply put, APS is an autoimmune disease that causes irregular clotting of the blood in the veins and arteries. The condition can affect any organ, including the lungs, brain, liver, kidneys, eyes, heart and skin. It can affect anywhere blood flows in the body.
Symptoms of APS can include any of the following: stroke, dementia, memory and cognitive problems, migraines, heart attacks, thrombophlebitis, fatigue, dizziness, numbness, double vision, difficulty walking, pulmonary embolism, blurred or loss of vision.
Once Khan realized what he was dealing with in his new patient, he began to aggressively treat Henze-Yeagle for APS, a disease not new to him. Today, Henze-Yeagle is on blood thinners and Parkinson’s disease medication to help with severe arm tremors, and in extensive physical and occupational therapy to help overcome her problems with walking.
“Dr. Khan is the first doctor in many years that was willing to take me seriously,” Henze-Yeagle said. “Without him, I probably would not be alive.”
Henze-Yeagle was in her early 20s when she first began to exhibit symptoms. At the time, she had bouts with vertigo and lost vision completely when she got overheated. She persevered, received her nursing degree and went on with life. At times, she would have blackouts. She had unexplained bouts with hives. Her head would spin. She had tingling and burning in her legs. She consulted doctors. She was often put off as a “psych case,” because they felt she was making it up.
“Then, I finally had a doctor who did an MRI, who found suspicious lesions on my brain — he thought I might have MS,” Henze-Yeagle said. “I tested negative for MS and lupus and was sent home.”
Seven years ago, while eating lunch in her car at the clinic she worked for in Rockford, Henze-Yeagle had a seizure. It was not until her boss found her in her car that she knew something was wrong, but she returned to work.
“I got out of the car, I couldn’t walk or talk right,” Henze-Yeagle said. “They sent me to the ER, ran tests.”
Two months later, after more tests, results were sent to Mayo Clinic, which returned with a positive result of APS. Then Henze-Yeagle began to take a blood thinner, but no doctor told her she had a stroke, even though tests showed lesions on the brain. They said “possible stroke.”
Her speech improved, as did her gait. She chalked things up to getting older. They had taken her off blood thinners one year later. She went on with life for the next seven years. Symptoms persisted. She still could find no doctor to take her seriously, even though she told them she had APS.
In September 2008, Henze married Chris Yeagle. She settled into married life in rural Orangeville. She continued her nursing work in Rockford, until that fateful day almost a year ago. While passing out medication, she lost vision. She couldn’t walk, talk and had an extreme headache. She ended up in an emergency room at a nearby hospital.
“I thought, oh my God, I couldn’t believe this was happening to me — it was worse than before — pure weakness,” she said. “I told them about APS in the emergency room and had to explain it to the doctor.
“I saw a neurologist, who told me I had a migraine, and they sent me home — I didn’t receive treatment — apparently, I didn’t fit the stroke scenario,” she added.
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