How do actual people live with von Willebrand disease (VWD)?
A VWD diagnosis comes with its own set of challenges and obstacles to overcome, but learning about others who are living well with the disease is sometimes the best medicine. Educating others about what you‘re going through, expecting the unexpected, and the knowledge that you‘re not alone are just a few of the things these VWD veterans have learned and are eager to share with you in these short bios.
Have you always been careful about treating your VWD?
No. When I was younger I didn‘t want to deal with VWD, so I just didn‘t take care of myself and my bleeds, even though I had to quit gymnastics. I had nosebleeds that would drip down on my clothes; I‘d have lots of bruises on my legs; when I was on my cycle I‘d have to change my pads every hour or so. But If I had a bleed, I still wouldn‘t say anything; I hoped maybe it would just go away. I think that made me sicker. Then my mom said, “If you don‘t take care of yourself, you don‘t know what‘s going to happen.” I want to be there for my little brother, so I changed my attitude, and decided to go to camp and learn how to take care of myself.
What was the most supportive thing your parents did for you?
My mom knew something was wrong, and even when the doctors said, “Having her period for three months is normal,” she didn‘t accept it. I didn‘t want to miss school for doctors‘ appointments, but she said, “You need to see the doctor. This is important.” She never gave up. She kept pushing until I had a diagnosis. She was there emotionally, too. Her attitude was, “Don‘t worry. We‘ll figure it out together.” And my mom having that positive attitude really did help.
You knew something was wrong. How did it feel to get a diagnosis?
It felt bittersweet. Finally, I had an answer as to why I was bleeding so much. But I wanted the answer to be, “Oh, this is a small problem. Just take this pill, and it‘ll go away.” Instead, I finally had a response, but then I had to deal with it.
How did you work with your health care provider to set up your treatment plan?
The HTC recommended some treatment options, and then we worked through each one. They prescribed the first medication, and waited to see if my body would respond. It didn‘t. They prescribed a second treatment option. It didn‘t work either. I just kept bleeding—and I got really worried. We tried different treatment options until something was able to treat my bleeds and give me more control. I thought, “Thank goodness, finally something‘s working for me.” That was a huge relief.
Why are specialized camps helpful for people with VWD?
You meet all these people who have the same thing as you. Suddenly you don‘t feel so alone. They go through the same struggles, and you can really talk to them about it. You feel like you‘ve known these people forever; that‘s a bond you go home with. You‘re not this weird person anymore; you‘re just another person with von Willebrand disease. Plus at camp you have to learn how to self-infuse, which makes you more independent.
What do you wish that medical professionals knew about the disease?
I wish more of them actually knew what the disorder is! When I used to go to the hospital, they wouldn‘t know. I‘d have to explain it to them. Then they would get interested, but I still would have to call my HTC or doctor to send over my treatment and explain that. So it takes a long time. And it‘s frustrating. It is also important for them to understand that every person who has VWD is different, and that someone who is type 1 may bleed just as much as someone who is type 3—everyone bleeds differently, depending on their phenotype.18
Why is it important not to be isolated and to have a supportive community?
It‘s good to belong to a group who accepts you for who you are. If you don‘t have anybody who supports you, then you become depressed, and you‘re less likely to take care of yourself. You don‘t face the disease or learn how to properly deal with it, which could make you even sicker. It‘s also good to help other people; then they will help you back.
What advice would you give other people who are living with VWD?
Von Willebrand‘s is a part of you, but it does not define you. The people who love you will accept you for who you are, and you should, too. Don‘t let other people bring you down. Yes, there will be difficult moments, but you just have to push through them, take care of yourself, live your life, and be happy.
Jacey is a teenager living with von Willebrand disease. She‘s traveled a rough road to living well but her family has been behind her every step of the way. Watch Jacey and her mom talk about their commitment to raising awareness of VWD.
JACEY: My name is Jacey Gonzalez…and I have von Willebrand disease.
JACEY: Some of the symptoms of it are joint bleeds…constant nose bleeds…bruising, just everywhere…
KELLY: I‘m Kelly Gonzalez, I‘m mother to Jacey…
KELLY: … There are a lot of things people don‘t understand about von Willebrands… about the effects on her life.
KELLY: She immediately becomes weak…she‘s losing too much blood…she‘s not coagulating properly…
KELLY: …and she‘s having issues at school…
KELLY: ….she‘s, you know, walking down the hall in the middle of the night crying, “Mommy, I feel weak, something‘s wrong”…
KELLY: …and she‘s falling face down…
JACEY: Well, I held myself back growing up…from going on trips with friends, and even going on school trips, just because it wasn‘t worth the risk of something bad happening to me.
KELLY: My ideal world…there would be education and everyone would know how we can fight this battle….
KELLY: Because people should never have to battle every day of their life.