A Waiakea High School senior wants to educate health care professionals and the public about bleeding disorders after her own life experiences.
Tristen Cullio was 5 years old when she was diagnosed with Von Willebrand’s disease, a bleeding disorder that affects about 2% of the population.
“When I was playing with friends in school, I was the only to be bruised after an activity,” Cullio said. “My mom was worried, so she took me to the doctor and they diagnosed me with Von Willebrand’s.”
Living with a bleeding disorder means it takes extra time to form a blood clot and stop bleeding. Depending on the severity and type of disorder, treatment is given through medication or infusion.
Although bleeding disorders can become severe, Cullio has been able to get used to living with Von Willebrand’s without it affecting her daily life.
“I got used to this after a while and even played softball for a couple years,” Cullio said. “It doesn’t stay on my mind, I just have to be extra careful if I’m doing something active.”
For 11 years, Cullio has been able to take medication to control her bleeds whenever she has one. Recently, the medicine was recalled and production of the correct dosage is not projected until 2022.
If she does have a bleed, Cullio would have to go to the emergency room, which would require an expensive copay.
“The recall on the medicine is something that affects everyone with the same disorder,” Cullio said. “Even in nonemergency situations, you have to be admitted to a hospital to receive treatment.”
To answer this concern, Cullio decided to center her high school senior project on creating a fund that would benefit patients with bleeding disorders who are treated at Hilo Medical Center.
“The fundraising will help patients getting infusion treatments and going to the ER for bleeds,” Cullio said.
While raising funds is one component of her project, Cullio is also working closely with the Hilo Medical Center Foundation and the National Hemophilia Foundation, Hawaii Chapter to create educational materials about bleeding disorders for health care professionals.
“When I was 11, I was hit by a car and had to go to the emergency room,” Cullio said. “I had to explain a lot to the doctors and really push them to make sure I wasn’t bleeding internally. I went through a few doctors before someone realized what was going on with me.”
Cullio’s experience is not unique. Kyra Calbero has had to explain her disorder to providers through most of her life.
Calbero is the program manager for the Hawaii Chapter of the National Hemophilia Foundation and lives with hemophilia.
“I have had providers who tell me I don’t have hemophilia. For some reason, they don’t correlate hemophilia with my injuries,” Calbero said. “I’ve gone through so many providers, because I’ll get upset to the point where I don’t want to deal with it anymore.”
A large part of the foundation’s goal is to teach teens and young adults how to advocate for themselves when they are in a similar situation.
Cullio is working with Lisa Rantz, executive director of the Hilo Medical Foundation, to put together educational materials for Hawaii doctors, nurses, EMTs and other providers, so explaining bleeding disorders becomes less of an issue for patients.
“We’re going to create a program on bleeding disorders through Project Echo, which are hour-long education sessions doctors and nurses can attend,” Rantz said. “We’re hoping to run it through the pediatric series, which would make our scope broader.”
Another example of an educational tool Cullio, Rantz and the National Hemophilia Foundation want to develop is a pamphlet that could be given out to patients at the ER who may begin to realize they have frequent bleeding.
Bleeding disorders like hemophilia are rare and relatively unknown to the public, according to Kristi Harvey-Simi, director of chapter development at the National Hemophilia Foundation.
“Bleeding disorders take up about two paragraphs in medical school,” Harvey-Simi said. “Doctors usually won’t use extra time to further research something they may never run into.”
The National Hemophilia Foundation and Hemophilia Treatment Centers were created to help alleviate issues many patients have run into with their providers. The centers provide families with ways to connect with others that also live with bleeding disorders.
There are camps for children, education programs and fundraising opportunities for families that want to find a community of people with bleeding disorders.
Calbero was embedded in the hemophilia community while growing up in Hawaii, which helped her get the job as project manager at the Hawaii Chapter after college.
“Commonality can bring people together and help foster a community where people can build relationships with each other,” Calbero said. “Because hemophilia is rare, giving people the opportunity to connect with others is so important.”
The Hawaii Chapter has relationships and routine contact with 56 families throughout the state. The chapter hopes to reach more, who may still be unaware of their condition.
“The more people talk about their bleeding disorders, the more we can spread awareness to people who may not know this could affect them,” Calbero said. “Being more willing to get out of our comfort zone will only help the topic become less taboo.”
Anyone interested in donating to the Bleeding Disorder Support Fund created by Cullio can send a check to the Hilo Medical Center Foundation or visit www.hilomedicalcenterfoundation.org. to donate online.
For more information on bleeding disorders, visit the National Hemophilia Foundation’s website at https://www.hemophilia.org/.
Email Kelsey Walling at kwalling@hawaiitribune-herald.com
