Learning and Overcoming
Jacey talks about her life with von Willebrand Disease, her worst night ever and what she wants the newly diagnosed to remember.
You have to learn about the disorder itself, learn how to self-infuse, learning personal limits and what can and cannot be done on a daily basis. Jacey was forced to learn those things since she was diagnosed at age eight by her oncologist, who was treating her for leukemia at the time.
It would be several years later when Jacey, living with von Willebrand disease (vWD), learned the hard way that if her blood pressure becomes too low, it turns into a very serious situation.
When Jacey was a junior in high school, she was “having a lot of clotting issues in general, joint bleeds, menstruation, bruising like no other.” These things on top of stress from school, and infusions really got to her. She was in a lot of pain every day for about a week, and one night, “in the middle of the night, I woke up in such a bad state of being. I felt weak and dizzy and oriented. I got out of bed and walked down the hallway, and after that, everything went black.”
After this incident, Jacey sought help from the Hemophilia Treatment Center of Las Vegas where she was able to find “a way to manage the times when my blood pressure does in fact drop. Everything since then has been getting better, but that was by far my worst day as a person with an inherited bleeding disorder.”
Since then, Jacey has learned ways to manage her vWD. She plays softball and golf by making sure she has medicine on hand and she properly infuses beforehand. Quitting was never an option. In fact, she played softball before her diagnosis so “everyone understood that there was nothing that would make me give it up.” Her strong will helped her be “determined that vWD would not affect my daily life as much as possible.”
After the worst possible day of living with an inherited bleeding disorder and everything she has learned, Jacey has advice for younger kids who are learning to live with an inherited bleeding disorder: “My advice would be to not let the disorder beat you. This is something you will end up living with for the rest of your life, so learn to love it. Take part in the activities and seminars you are invited to, get involved and learn how you can help other people that are in the same position that you once were. Embrace it and face it head on. If you don't cower, your disorder doesn't win and that is the overall goal when managing a chronic illness.”
The Nevada Chapter of the National Hemophilia Foundation offers a number of support groups, including groups for families of newly diagnosed children. For additional information on support groups or any other services and benefits provided by NHF Nevada, please call (702) 564-4368 or email Anne at firstname.lastname@example.org.
The process is easy. Simply fill out the online vehicle donation form on the national website or call 1-855-NHF-4-CAR. Your vehicle (running or not), is picked up free of charge, sold for you, and a portion of the proceeds come directly to the Nevada Chapter of the National Hemophilia Foundation (NHF-NV).
This unique giving opportunity not only helps you clean out your garage but also supports our mission to fund vital research and provide key educational programs and public policy initiatives for people with bleeding disorders.
Help to support comprehensive hemophilia care in the state of Nevada.
Assist with ensuring emergency factor availability in hospitals statewide
Sponsorship of educational programs for consumers and healthcare providers
Sponsor youth ages 7-17 to Hemophilia Summer Camp
Distribution of educational materials Publish informational newsletter
Assist clients with insurance denials and reimbursement problems
Host Consumer Social Events such as picnics and Holiday Parties
Telephone peer support network and youth group
• Improve consumer and healthcare provider education about inherited bleeding disorders
• Promote and support comprehensive hemophilia care in Nevada
• Raise the awareness of bleeding disorders
• Serve as a resource center for distributing educational and informational materials
• Diminish geographic and insurance/reimbursement barriers to receiving adequate care
“To improve the quality of care and life for people with hemophilia, von Willebrand disease and other inherited bleeding disorders, through education, peer support and advocacy.”