Tell Your Story
What follows here is a personal story from a woman named Jane who was diagnosed with a bleeding disorder as an adult, after facing many challenges. In her words (with only minor editing):
The first symptoms I had came when I was about 4. I had run through the windows of our storm door, slicing open my wrists by the glass. The fact that the cuts were on my wrists meant that it would take longer anyways for the bleeding to stop - yet the ER doctor put no stitches in.
We grew up in a rural area. Our playground was the nearby woods, our homemade baseball diamond, skiing/sledding in our own yards. I’m serious when I say that my natural skin tone was black and blue until I was about 16.
When I was 10, my gums started to bleed. Not when I brushed my teeth, but when I smiled. When I played my clarinet, or sang in my elementary chorus, or spoke, or ate, or frowned. Huge pockets of blood would form on my upper gums that would just burst at any given time. My purse was packed full of gauze for me to pack my mouth with when this would happen. Countless appointments to pediatricians, dentists, dental surgeons, all to no avail - diagnosis, bad case of gingivitis. Have her eat prunes and raisin bran because prunes and raisins have lots of iron in them - guess what I won’t touch to this day? I was literally out of school for 1/2 the year, because I’d be out every other day due to the amount of blood I’d swallow.
Move ahead to the beginning of menses - I’m sure no surprise to you or any expert, my flow was crazy. I’d be one of those that would have to change her pad every 15 - 20 minutes. I’d be flowing for 3 weeks, off a week, back on for 3 weeks, off a week, this lasted for over a year. Then after when I became more regular, I would flow for 11 - 14 days, every 28 - 31 days. I also ended up with PCOD (polycystic Ovary Disease), endometriosis, and dysmenorrhea. One day while in Middle School, I was not able to make it to the rest room in time to change my pad, I lived with the embarrassment and the name calling from 7th grade until the day I graduated high school.
I would miss at least 1 week of school each month, including college - then into my working years, until a family physician decided to put me on birth control when I was in my mid twenties.
During all this time I would tell doctors, I think I have hemophilia, their answer was always the same - you can’t have hemophilia, you’re a female, only boys have hemophilia.
I hemorrhaged on the table at 23 when I had my tonsils out. In a horseback riding accident at the age of 24, my left kidney bled for 6 months. After my 3rd D&C for endometriosis, I hemorrhaged 10 days after I went home.
Moving on to my 45th birthday, my friend had asked to take me out for a birthday breakfast. I had stopped for my yearly cholesterol screenings before going to her home. By the time I got to her house. I felt something cold and sticky in my jacket sleeve. I took my jacket off to see that I was bleeding all over the place. We got that cleaned up, got the bleeding stopped finally. That same night I was playing with my cat on the floor, sat up quickly and fainted. The next day I called my doctor to tell him what had happened. Knowing that the two incidents were probably not related, but wanted him to know anyways, he called me into his office. At that time, he started asking me what I was like when I was a kid. Did I bruise easily? Did my cuts heal easily? etc As he had not become my doctor until my 30’s - I relayed everything to him.
He then stated, I think you have von Willebrands. What’s that? A surprisingly common (between 1%-3% of the population) bleeding disorder that occurs equally in both men and women but typically can impact women more because it is characterized by bleeding from soft tissue - and women experience menses. It was a good thing I was sitting down because I would have fallen over, immediately I became overcome with so many emotions. My brother happens to be an attorney, I flew to his office - of course I wanted all of those past doctors to pay! Told Mark that I needed to talk to him as my attorney, not as my brother. I needed him to sue everyone, because no one would ever test me and I’d been telling them for years and they wouldn’t listen. In short, Mark’s response was - how much do you want me to sue for? What dollar amount? Because I have to go for an amount and I need to know what amount of money is going to make it all go away? The rascal - can’t stand it when he’s right.
I went through more than a year of grief, mourning and so many emotions. I finally had to reach inside and forgive all those - from the kids in school to the doctors and dentist. It took longer than a year to come to grips with it all - which considering all the damage took 32 years - maybe a year wasn’t really that long.
However, I never want to see another girl, woman, family have to go through that again.
Your story can make a difference.
- Are you an individual with a bleeding disorder or a caregiver who has medical bills that weren’t covered by insurance or other forms of reimbursement?
- Have you or someone close to you had trouble obtaining or keeping adequate health insurance coverage?
- Have you reached or are you facing a lifetime insurance cap?
- Have you been turned down for Medicaid, Medicare, or another government program?
- Has an insurer or government agency limited your ability to access a particular product or service?
- Are you a healthcare provider with a patient whose insurer has limited access to a product or service, or has denied reimbursement for a needed service?
The National Hemophilia Foundation wants to hear from you. Real stories about personal experiences can help lawmakers, the media, and others understand the everyday struggles that people with bleeding disorders face in accessing high quality healthcare and adequate reimbursement. You can submit a story anonymously, or, if you are willing to include your name, we will get your permission before using it.
To share your story with us, please contact Andrea.Lester@RochesterGeneral.org or call 585-922-5700.