I always knew that my dad had hemophilia, and that I was a carrier, but it wasn't until I was twelve years old that I was tested and found to have lower clotting factor IX levels as well. Of course, years ago, women did not have bleeding disorders, especially hemophilia. That was it. My test results were set aside, and I was told that if I ever had a surgery I might need to have factor replacement. But that was a long shot, so that statement was kind of given a s a side note. However, the joint bleeds began when I started playing soccer.
I sat out many games with a "twisted" ankle, though I knew what it was; the purple and then greenish colors surrounding the back end of my feet around my ankles. To me it was obvious. "But girls don't have hemophilia."If I had a quarter for every time someone said that to me...
So I often iced my ankles and played thorugh the pain.
"Why are you always injured?"
A coach asked, and even sent me to a sport trainer to determine why my ankles were so "weak". They couldn't hear me either.
But soccer was my passion, so I continued on, even through high school. It was there that I experienced my first knee and hip bleeds. I knew what they were, but often iced them before and after practice and games - and played through the pain. That was not always effective though, as the pain would get so bad that I had to use crutches and take weeks off at a time. The joints wouldn't swell enough to be obvious, but I could see the discoloration of the bleeding under the skin - especially after icing each joint. I knew, but know one would listen.
And then there was that time that I fell really hard and my elbow landed on a metal slide. It swelled up so big that a tiny scratch on my skin split apart. The x-ray revealed that there was not a broken bone - just a hematoma. Or as I would call it, a bleed. But that was considered normal swelling, even for a person without a bleeding disorder.
And then my wisdom teeth came out. After bleeding for two weeks, I was told to put tea bags on the open wounds to stop the bleeding. I knew what was wrong, but no one could hear me. Another week later, after a soft food diet through the Thanksgiving holiday, and after numerous tea bags, the bleeding finally stopped.
As I got older, I started attending hemophilia conventions and found out that women could have bleeding disorders! Imagine my joy at finally being recognized! But I still could not find a hematologist that would agree with that fact, and who would consider treating me. And later on, through trying to network with other women, I found out that clotting factor IX levels fluctuate with hormones and other changes in women's bodies. This made sense, because I definitely bruised and bled more at different times during the month.
But the people that needed to hear that most, would not listen.
I attempted to train for a half marathon, thinking that jogging would be better than a contact sport. During the third week of training I had extreme pain in my hip. I continued to train and eventually was in so much pain I ended up on crutches.
A hip bleed - I knew what it was.
When my son has a bleed, the hematologist doesn't flinch at prescibing him what he needs. But not me, not a woman. I had to be off of my feet for three months - but no one would consider the possibility.
Women don't bleed like that - not even carriers with lower clotting factor levels.
No one would validate what I already knew: I am a woman with a bleeding disorder!
Now my knee and ankle joints ache in cold or moist weather, and exercising is difficult and painful - which is a consequence of untreated bleeds. I feel like I have been one of the forgotten or overlooked and sometimes even scorned.
After a miscarriage and D&C surgery, with the doctor insisting that my low clotting factor levels would not be a problem, I had again, painful complications and extra bleeding.
After slipping on the tile in my house and landing on my elbow again, hard, the same symptoms: swelling, pain and bruise-like coloring in the weeks to come. No one would listen.
I've been around hemophilia my whole life. I treat my son's bleeds. I know the symptoms. I know the disorder inside and out - I even train school staff and scout leaders about it. But my own needs have been hushed. My own fears have been swept under a rug. I felt like I was losing a tiring battle. I was strong, yet weak, as I tried to speak out, hoping that someday girls younger than me will be given the benefit of the doubt.
And then a friend with a bleeding disorder reached out to me. She is also a woman. She recommended her hematologist and told me he had saved her life.
"He will listen to you," she said.
So I called, and went to an appointment, and even though I was pregnant, had my factor levels tested regularly. They were consistently going up with the hormones of my pregnancy. Even though my levels were high, I was given factor replacement right before delivery, and then my levels were tested again. They had dropped from 78% to 28% (mild hemophilia range), even with the factor in my system! I recieved factor replacement for two weeks after the delivery - and my recovery was amazing compared to my first two.
It was now documented!
I am a woman with a bleeding disorder.