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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.

 

 

Please see below for a word from our 2020 Gainesville Clot Trot Committee Champion, Joe Burke.  Click here to register for the 2020  Clot Trot and fundraise for those in the HFGF community when they need it.

Friends of Bleeders,

I was born in a very rural part of Appalachia nestled in a coal mining town of Whitesburg, Kentucky. My father made his livelihood mining coal from the mountains of southeast Kentucky, and in this upbringing, our closest Hemophilia Treatment Center was 3 and a half hours away. Lexington, Kentucky was our closest bleeding disorder chapter, and materials for bleeding disorders in the early 80’s were scarce. My parents made sure to get me to my appointments, and thankfully I never missed a single doctor’s visit. I was never active in my local hemophilia camps or programs growing up because we lived so far away from the events.

I share this brief glimpse of my past to truly showcase what a treasure the Hemophilia Foundation of Greater Florida is. At age 28 I moved to Orlando, Florida from Kentucky to not only seek better healthcare, but to eventually marry the woman of my dreams. During this unsure transition from one state to the other, I reached out to Fran Haynes for some mentoring, guidance and how I could get involved in the chapter’s programs. Now, for the first time in my life in 2009, I could finally get involved in the bleeding disorder community locally, and partner with my local organization.

We’ve come a long way since the uncertainty days of the early 80’s. At a time when I needed to hear sound wisdom for important life decisions that would impact my own healthcare treatments, the HFGF was there to lend the shoulder. A few years ago, I broke my left foot from a fluke accident. Being on disability and unable to afford the rehabilitation boot I needed, the foundation stepped in to assist in getting the care prescribed. And most importantly, when I just needed an ear to share my struggles of coping with my bleeding disorder, the foundation was always there to listen and offer sound advice.

I’m involved with the HFGF because of the huge impact the team and chapter have had on my life. I stand today more educated, more sound in the choices of treatment and more confident as a patient that we are not defined by our disabilities. Through the continued partnership with the team at HFGF, my life and overall mental health are thriving because of the sound wisdom and relationships I’ve established with this organization. The foundation was and continues to be there for me throughout my journey in living with hemophilia. Every penny the foundation gets from it’s fundraisers and charity events goes directly to those who need it most. I can say this with assurance, because I once was on the receiving end of their uncanny generosity.

Join me this December 19th at Depot Park in Gainesville, Florida as we host our Gator Clot Trot. I will be in attendance as this year’s “Chair Champion,” and I can’t wait to meet each of you! Gather your teams, huddle up those groups, and let’s all walk to raise awareness for all bleeding disorders of Greater Florida.

Heartfelt Thanks,
Joe Burke
Clermont, Florida

CHANGE THEIR WORLD. CHANGE YOURS. THIS CHANGES EVERYTHING.