When I was told, that I was one out of five thousand people that have this! I realized it was not the kind of lottery I wanted to win! I was diagnosed with a genetic disorder that causes blood clots back in 1999, which can cause strokes. The disorder is called Factor V Leiden homozygous and so far I have experienced a blood clot in my right eye in 2000 and 2007 a deep vein clot in my left leg. I have had several superficial clots incidents that feel like someone pinching my leg and around the pinch it is hard and inflamed. I received treatment for these superficial clots but Doctors do not considered them as serious as the first two problems I mentioned.
Factor V. Leiden, a common hereditary coagulation disorder, is found in 5% of the Caucasian population and 1.2% of the African Americans. There are two types: heterozygous (one damaged gene inherited) which has a 3-8 fold chance of a stroke while homozygous (two damaged genes inherited) has a 30 to 140 fold chance of having a stroke.
Presently, I am taking blood-thinning medication because my chances of getting another clot increase with every deep vein clot I have. I take a medication everyday and go for monthly blood level to make sure it stays with in normal range. At age 54 years old, this is what I need to do for the rest of my life to prevent further complications from this genetic disorder.
In grade school, my complaints were headaches and allergies that caused me to be a C- student. When I stopped growing in high school I got B’s and A’s and went on to graduate from College with a B.S. degree in Psychology. As an adult, I had bouts of headaches would keep me in bed due to dizziness about once a month but more often in high pollen times.
My oldest daughter Natasha was birth was without complications. In the next few years, I had a miscarriage and a stillbirth, an OB specialist who did many tests and said I may have experienced “gestational Lupus”. He recommended I take a baby aspirin and try again. So through out the pregnancy with my daughter Chloe, I took a baby aspirin daily.Problems arose after I delivered Chloe; I began to hemorrhage and was diagnosed as having a bleeder in my uterus. After the birth I went through emergency surgery to remove my uterus then spent time in ICU to recover from delivery and surgery.
Chloe was diagnosed at birth having Floppy Baby Syndrome, which is low tone in her muscles and she feels like a “rag doll” when held. Later after medical and educational interventions, she was diagnosed as to having “Expressive Aphasic Disorder”. She showed a general weakness on the right side of her body and left side of her brain. She is showing remarkable recovery but it has come with a lot of work!
My medical issues were vague symptoms of allergies, Asthma, high blood pressure at this time. Then in 1995, I was rush to the ER room with a bleeder at the top of my stomach. Again, I used an aspirin product and had to have the top part of my stomach removed. This was the second surgery after taking aspirin so I was told to stay away from aspirin products.
So these symptoms that did not seem to connect: miscarriage, stillbirth, high blood pressure, high bad cholesterol, allergies and asthma were puzzling Doctors as to how to help me. My issues got worse in high pollen times usually I would end up in Emergency room with an asthma attack combining with very high blood pressure. A high dose of a routine asthma medicine would relieve my asthma and return my blood pressure to normal ranges.
In September 1999, I was tested for a genetic disorder called Factor V Leiden and found to be homozygous for this disorder. My Doctor’s suggested a baby aspirin but with two surgeries that related to aspirin reaction, we decided against. Since I was past childbirth age we agreed on a wait and see.
Then in September 2000, I developed a right eye problem that wipe out my ability to read in that eye. After seeing two eye Doctors who couldn’t explain what the problem, my third eye doctor was able to explain that it appeared to be a virus and blood clot had affected my right eye.
I was referred to a retinalogist in 2004, who exam my eye and confirm this diagnosis. I ask if this had anything to do with Factor V Leiden, he replied,” Yes” then referred me to a hematologist to consider anticoagulation therapy.
January 2005, I saw a hematologist did an extensively interview of my medical history. He ran a number of tests but only found the Factor V Leiden that we already knew. He wanted me on baby aspirin but my history of bleeding ruled that out quickly. We again agreed on a wait and see if I develop another problem before resorting too much stronger medication.
Earlier this year 2007, I was on blood pressure medication and another medication to decrease my bad cholesterol. This seems to have helped reduce the amount of allergy and asthma medication, I used. I went to check out a program for my daughter where I experienced a major reaction to some type of environmental allergens in the building I visited. This began with a very weird headache progressed into flu like symptoms then at four am I was taken by paramedics to the Emergency room with blood pressure that dropped drastically when I sat up and even more when I stood up. At the emergency room, I received several bags of fluid, after 2 hours I was discharged with normal blood pressure. Several days later I developed several superficial clots. I told my doctor what happen a few days early, he first treated the superficial clots but then order an ultrasound of my leg. That is how they found the deep vein clot and started me on blood thinning medication.
Our family history shows the last know family member who had cancer was my Father Grandmother in the 1930’s. My family medical issues are strokes and heart attacks mainly. This year, Natasha was confirmed Factor V Leiden heterozygous and Chloe was confirmed to be heterozygous a couple of months later. They will be monitor by their doctors through factors that include increasing age, obesity, trauma, surgery, smoking, the use of oral contraceptives (birth control pills) or hormone replacement therapy, and pregnancy. So we need to work with our doctors to figure out how to deal with this genetic disorder in all issues in our health that may come up.
Today on medications for my heart, my health has never been better or more stable. Since turning 50 years old, my energy has increased; my allergies and asthma has greatly improved so I am on less medication for them. So by addressing my heart needs, did my health issue improve because of what we did? We can’t say for sure but I love the change!
My daughter has a weakness on her right side with noise in her left ear and complains of headaches in left eye area. Now that she is also confirmed Factor V Leiden Heterozygous, Doctor are confident that she had a stroke in the womb. This could have been prevented if the test was developed at that time. This is a manageable disorder if you and your doctor know it is there.
