Thoughts about hope and hemophilia...
Life was normal for Brandee. She lived near the coast and enjoyed water sports, softball, and dance. When she was 10 years old, her brother died of a platelet disorder, idiopathic thrombocytopenic purpura. Two years later, she experienced her first menstrual cycle which lasted more than 30 days. After a year of tests, she was diagnosed with von Willebrand’s disease. Brandee had always bruised easily, but no one thought much about it. “I got put on the back burner because my family was always dealing with my brother’s issues. I wasn’t constantly in my mom’s care long enough for her to see if something was wrong.”
After losing a son to a bleeding disorder, Brandee’s mom was most fearful of her diagnosis and worried about losing her daughter. “She kept me very close.” Brandee’s reaction was quite different. Being a teenager, initially, her diagnosis seemed insignificant. “You’re young and you don’t really care.”
That attitude soon changed. Her bleeds were very difficult to control and she had to be infused so frequently that she would often go to school with an IV in her arm, which she tried to cover with clothes. Eventually, it became obvious that her disorder would be much easier to manage at home and Brandee started to homeschool. Suddenly, her “normal” childhood was anything but normal, and she was missing being around her friends. Even worse, everyone was placing limitations on the activities in which she could participate, and she did not understand why things like riding jet skis, playing paintball, softball, and dance, activities in which she had always participated, were now off-limits.
For the next 10 years, Brandee would try to find the right treatment to control bleeds associated with her menstrual cycle, spending lots of time in the ICU for transfusions. At times, she could not walk three feet without passing out from the extreme blood loss. One surgeon who has done multiple port placements on Brandee says that she seemed “very annoyed and mad at the world”. Although she did not agree with that statement at the time, in hindsight she says her doctor’s perception was correct. “I was hoping that it would just go away; that I could just put it on the back burner and that it would go away. I just really wanted to be normal and just be a kid.”
Her first sense of “normal” living as a person with a bleeding disorder came when she attended her first camp. Her “bleeding” friends, compared to the “normal” ones”, hold a special place in her heart. “I love them, and I don’t know what I’d do without them. I wish they would have come into my life a lot sooner than they did because they are some of my best friends. They understand the challenges of living day to day life with a blood disorder.. They’re always willing to share their thoughts and opinions with me and give me any advice I may need. I love the advice they give, but they’re also just there if I need them.”
Despite multiple treatment attempts spanning many years, Brandee’s uncontrolled bleeding continued and a hysterectomy seemed the best course of treatment. Because she was only 30 years old and had no children, finding a doctor who would agree to perform the surgery required patience and persistence. Her own OB/GYN disagreed with this course of treatment and even suggested that Brandee see a psychiatrist. This was unsettling and left her with a feeling of disrespect for this doctor with whom she had a close working relationship.
Brandee says she was “completely fine” with having a hysterectomy, as she had wanted one since the age of 18. She was in such misery each month when her cycle started, and her quality of life was suffering greatly. At times her bleeding was so bad that she was bedridden. She knew that if she ever had kids, there was a great chance that her kids would inherit her disorder and she did not want them to suffer the way she had. She also accepted adoption as a viable option. She eventually connected with a doctor whose wife suffered from a bleeding disorder, was empathetic to her situation, and agreed to perform her hysterectomy.
It was not until after her hysterectomy that she started to embrace her von Willebrand diagnosis. “I finally felt better. I had my hysterectomy. I didn’t need blood transfusions or iron transfusions anymore. I could finally do things again.”
Around the same time, she attended her first conference where she connected with people who understood her. This conference completely changed her perspective on her disorder, as she realized that she could become more involved in the bleeding disorders community.
The conference, along with a push from her doctor, led to the creation of the VWD Sisterhood, a support group on Facebook and Instagram for women with von Willebrand Disease to gather and learn to advocate for themselves. Brandee and a friend manage the group and share posts covering a variety of topics including helping resources, education, advocacy, and empowerment.
While this group has been challenging for her, the rewards have been far more abundant. She looks forward to the moments when she can celebrate the success of a group member and say, “Yes, you did it. You did it!” These victories inspire her to learn more and keep bringing information to the group. “I hope that the group grows, and women keep coming and making those lasting friendships. There’s nothing like having a bleeding friend.”
Brandee also credits prayer with helping her to overcome and push forward. “I believe prayer helps everything.”
Her final message of hope to anyone struggling is, “Keep fighting and keep advocating for yourself because you’re going to get there. You’re going to get the answers that you need; you’re going to find the treatment that you need. Just keep advocating for yourself and your disorder.”