Brandee Cookston, a 34-year-old woman, learned she had von Willebrand disease (VWD) type 3 at age 12, after experiencing extremely heavy periods. According to Brandee, when she started her menstrual cycle, it never stopped. “It was extremely heavy, so my parents took me to my pediatrician, and she ran a bunch of tests and said that she was going to have to refer me to a hematologist (a doctor that specializes in diseases related to blood) because she thought I had VWD, which I did. It was a surprise.”
Two years before Brandee was diagnosed, her brother passed away from ITP (idiopathic thrombocytopenic purpura), another blood-related condition. However, to Brandee’s knowledge, no one else in her family has been diagnosed with a bleeding disorder.
Brandee’s care is currently managed by an adult care provider who also runs the local HTC. Finding a treatment plan that worked well was initially challenging for Brandee and involved a lot of trial and error. “The first medicine they put me on was DDAVP [desmopressin, a medication used for bleeding disorders], which, if you know, doesn’t work for type 3 patients. It didn’t control the bleeding. They put me on birth control pills – several different types – that didn’t control the bleeding. Then, we finally ended up switching to another type of medicine called Humate-P, which was a godsend because it worked so well. The bleeding completely stopped for a little bit. I didn’t have as many bleeding episodes or breakthrough bleeds. Once I switched to Humate-P, my life got a lot better.”
In addition to finding the right medicine, Brandee has also had trouble administering the medicine into her veins. Over the years, she’s had to switch between traditional infusions and ports in an effort to get her medicine. “I had to have a port placed because I got stuck over 32 times one day to get a treatment. I had a paramedic and two nurses try to administer my medicine trying to get a vein. After that, I went with a port. Over the years, I’ve had countless ports. My body always seems to reject them. We’re back to using my veins now. They still aren’t great, so it takes me or my home health nurse a few tries.”
In addition to the treatment challenges, Brandee also had a hard time growing up with VWD because she felt she missed out on opportunities at times, like when she couldn’t go to youth camp for fear she might have her period that week and wouldn’t know how she would manage it. It was also hard to be unable to participate in all the same activities as other kids her age. For example, many people often told her she couldn’t take part in certain sports, like contact sports, for fear she would get a bleed. “When I was first diagnosed, they really did want to put me in a plastic bubble – ‘don’t touch her,’ ‘don’t let her do this.’ It wasn’t really my family, it was the school system or other people who didn’t really understand. They thought I was a porcelain doll and that I was going to break. They were scared.”
Even things that most people take for granted, like going to the fair and riding the rides, were off limits, and “extreme” sports and activities were strictly forbidden. “I know a lot of my friends were able to go and do extreme things – like they can go ice skating, play paintball, or different games – growing up [things] that teenagers like to do. I had to think a lot before I could join in and do anything. I never got to play paint ball. I did go ice skating, but I paid for it. It’s so hard on your joints. So, I’ve just had to try to change my interests. I can’t be so ‘extreme.’ To a lot of people, it’s not extreme, but to me, it’s extreme.”
Today, Brandee wants people to know that she “can pretty much do any and everything with limitations.” If she wants to do something that’s a little more dangerous, she can pre-treat herself to prevent a bleed from happening.
Resources/Access to Information
For Brandee, her greatest source of information and support, other than her doctors and home health agency, has been other patients in the bleeding disorders community with VWD or hemophilia. “I think the only people I really talked to and had a connection with was the home health agency – who took me in and treated me like their best friend. I could call them day or night. They would have retreats with VWD and hemophilia patients, where we could share our stories and just be ‘normal’ teenagers. They would also get the families together quarterly so that we could all reconnect and share any recent challenges. I was really grateful for that community, and I still am, because I’ve met so many people – great friends – that are friends for life now. Even in the waiting rooms at the hemophilia treatment centers (HTCs), you connect with so many other families from the community that you didn’t know had a blood disorder. It was a small community when I was first diagnosed, but now I know a very large community with bleeders from all over the world.”
Brandee is very involved in the bleeding disorders community. She attends VWD conferences, is involved in the VWD Connects Foundation, shares information about VWD on social media through pages like Southern Girls Bleed, and has served on pharmaceutical company patient-advisory boards. “I’m a member of several VWD groups where we come together, share stories, ask for advice, and just lean on one another for support.”
Advice for Others
When asked what advice Brandee would like to share with others, she said, “There are going to be some bruises and bleeds along the way, but this is a manageable disorder with the right treatment plan. Get involved with your local chapter, join a social media group, and always speak up for yourself. If you don’t, who will?”
And for the parents out there, Brandee wants you to know that “you’ve got this! You’re going to find the right treatment plan that works for your child. Find a support system, families who are going through the same challenges as you. Lastly, let them be kids.”
For Brooke Connell, von Willebrand disease (VWD) is a family affair. At 6 months old, Brooke was diagnosed with the most severe form of VWD: type 3. Before her diagnosis, no one in her family knew anything about the condition. But after she was diagnosed, her family members, including her mother and three older brothers, were tested. They, too, learned they had VWD, albeit a milder form known as type 1.
Looking back, Brooke acknowledges there were some signs of a family history of the disease. Her older twin brothers always had nosebleeds; however, because they had the mild form of the disease, they didn’t experience many symptoms. It wasn’t until Brooke was diagnosed at her 6-month checkup that her parents learned of her condition and, later, how it ran in the family. At the appointment, the doctor held Brooke down to draw blood. The next day, her abdomen was covered in bruises. This prompted doctors to run additional tests to find out what was causing the bruising. A blood test was ordered to check her factor (proteins in the blood that help control bleeding) levels. The results indicated very low factor levels.
Today Brooke is 37 years old and works for a health system as the Director of Marketing. She is also a mother of two young boys who are also affected by the disease: both her 7-year-old son Chance and her 2-year-old son West have VWD type 1.
Resources/Access to Information
To learn more about VWD, Brooke’s family read a lot about the condition and got involved with the National Hemophilia Foundation (NHF), attending their annual conferences to meet other people affected by the condition. However, according to Brooke, it was difficult finding people like her who had VWD type 3: “You don’t meet too many people with severe [VWD type 3]. The mild patients have a completely different experience with the disease, so I always related to hemophilia patients more. The best thing that happened to me was the VWD Connect Foundation’s Type 3 Conference that I went to in 2017. It was life-changing! There were people there who knew what I was talking about. They had the same symptoms. To see older women who were successfully living with VWD was so comforting.”
Since college, Brooke has received care at a hemophilia treatment center (HTC). Prior to that, her pediatrician and pediatric hematologist managed her care. According to Brooke, she is finally able to fully manage her condition, and the advent of self-infusion was a “game-changer” for her. “I used to have to go to the hospital to treat every bleed, but now I can infuse at home,” said Brooke. In fact, she explained, her boyfriend at the time, now her husband, learned how to mix and infuse factor with her. “He gives me the majority of my factor doses. I don’t think most people would know I have this disease because it’s so well managed now with factor and prophylaxis (preventive treatment).”
Growing up with VWD hasn’t been easy for Brooke. Having VWD limited her options for participating in certain sports, and living in a small town meant a lot of travel to access the hospitals where she could receive the best treatment. “Growing up, I was a tomboy. I wanted to do every sport. I loved basketball, but I had too many bleeds. The doctors said I had to stop playing. As a kid, prophylaxis was never an option for me. It was so hard. Anything could cause a bleed. Track, kickball. You’re just not as carefree being a child with a disease like that,” Brooke explained.
Brooke’s menstrual cycle also posed problems for her. “I struggled with heavy periods. My first period lasted 2 full weeks. I had to take birth control pills to manage it [the bleeding]. It’s embarrassing. There is a stigma attached to taking birth control at a young age. I would tell people it’s hormone replacement.” Brooke worried what would happen when she went off the pill because it took a lot of factor to manage the bleeds.
Having a family of her own was also a challenge Brooke faced. She had a hard time getting pregnant, going through numerous rounds of in vitro fertilization with her first son. “It was challenging to find a provider who was willing to do it [the procedure]. They thought it was too risky,” Brooke said. She suffered five miscarriages trying to build her family. The delivery of her son was also challenging. “I had to deliver without an epidural and had to have 5 pints of blood with my first delivery. I had a post-partum hemorrhage 3 days after my son was born and had to go into surgery to stop the bleeding. It was tough.”
Despite all of these challenges, Brooke says, she has learned how to speak up for herself: “I’ve had to. It’s made me strong. It’s empowered me.”
Brooke has been involved in the bleeding disorder community for quite some time. She has attended NHF’s annual conferences, served on the board of her local NHF Chapter, the Midwest Hemophilia Association, and has participated in Washington Days several times; she is now active in the VWD Connect Foundation.
Advice for Others
Brooke offers the following advice for others: “Learn all you can. Network to meet people and find people like you. That’s what’s going to get you through. When I was going through issues getting pregnant, connections we made were so valuable. I reached out to Dr. Andra James at Duke University after hearing her present at an NHF Conference, and because of that, we were able to have a child because of her knowledge and connections.”
And for the parents who may be reading this, Brooke wants you to know, “Everything’s going to be okay. There are such advances in treatment that I didn’t have. This diagnosis shouldn’t hold you back.”