HFGF Volunteer Spotlight: Alexis Wade
The most surprising thing about having a bleeding disorder for 21 year-old HFGF volunteer Alexis Wade is the challenge of managing it. “Sometimes,” Alexis says, “no matter how hard I plan, I cannot do what I want to. However, over time, I have learned that life just requires some flexibility.”
“Acceptance comes easier when you smile, revise your plan of action, and keep moving forward,” she adds.
This positive attitude and optimistic outlook characterizes the University of Central Florida nursing student. With a bright smile, and as friendly as she is kind, Alexis has been volunteering for the Hemophilia Foundation of Greater Florida since last year. Her journey with the bleeding disorders community started with a diagnosis that left her and her family surprised and looking for answers.
Alexis was first diagnosed with Von Willebrand Disease shortly after high school. She was getting ready for exploratory knee surgery when her surgeon, suspecting a bleeding disorder when he realized she had odd bruising with no apparent culprit, ordered specialized pre-operative bloodwork. When the results came back, Alexis was referred to a hematologist, who confirmed the Von Willebrand Disease diagnosis.
Her family was stunned. “The diagnosis came as a surprise to all of us, especially since I have a twin sister,” says Alexis. Then came the life-altering adjustments. After her VWD diagnosis, her hematologist recognized that her blood presentation did not match that of someone with Type I VWD. Repeated bleeding episodes meant Alexis had to have a port placed in to receive prophylaxis several times a week. Eventually both she and her mom learned how to take care of her central line.
Life with a bleeding disorder has challenged Alexis, but it has also given her a life goal; it was her experience with VWD that led her to a path into nursing. It has also given her the tools to advocate for herself and educate others about her disease.
“The greatest challenge in dealing with a bleeding disorder is running into physicians and other medical professionals who are unaware of how to treat a patient with a bleeding disorder,” she says. “The positive side of that is that I have learned how to advocate for myself and explain more about what VWD is and how it affects me more than I ever thought I would have to.”
Her journey with VWD led her to seek out, and eventually volunteer for, the Hemophilia Foundation of Greater Florida. Alexis found the HFGF after her hematologist mentioned that there was a bleeding disorders community in Florida that would send a nurse to her home to teach her to self-infuse. Originally from Saint John, Indiana, she previously volunteered there at a bleeding disorders organization as a counselor-in-training for their annual summer camp. It was therefore not surprising that, shortly after discovering the HFGF, she would begin volunteering as well.
She is a star volunteer. From advocacy to events, Alexis Wade does so much for the HFGF, balancing her volunteering efforts with her school responsibilities, but it’s all about giving back as far as she’s concerned.
“For me, volunteering is a way to give back to a community that has given me so much,” she says. “When I was diagnosed with VWD, I was lost because I didn’t know anyone else with a bleeding disorder. Becoming part of the bleeding disorder community gave me the chance to make friends with other people like me, to advocate for myself both in a hospital setting and in school, and to learn more about the various types of bleeding disorders.”
For Alexis, volunteering is a special and rewarding endeavor, one that allows her to connect with the bleeding disorders community and witness firsthand what HFGF does for patients. “When you volunteer,” says Alexis, “you can actively see the difference that helping out makes because kids can have the chance to go to camp every summer, young adults can have the chance to attend college because of scholarships, and kids can be provided with Medic Alert IDs that they might not otherwise receive due to cost.”
Thank you, Alexis Wade, for all you do for the HFGF. To learn more about HFGF and become a volunteer, visit hemophiliaflorida.org/volunteer.