How To Advocate For Yourself
HFGF encourages you to advocate for yourself! Click here for a brochure to print out. HTCs – Please share with your patients!
Being your own advocate means asking for what you need in a direct, respectful manner.
To Be Your Best Advocate:
You Have To Advocate Yourself:
Advocating For Yourself Medically:
Knowing how to navigate the healthcare system will allow you the best treatment possible. If you and your HTC team are partners in your healthcare decisions, you’ll feel ownership of your wellness. Standing up for yourself medically is your right.
Advocating For Yourself With Your Insurance Company:
It is your right to appeal your insurance company’s decisions on claims. Communicate with your HTC team. They can help. Be patient: This may take time.
Advocating For Yourself Legislatively:
Laws are made for you and the bleeding disorders community statewide and federally. You can have a voice in what laws are passed by understanding the process and identifying your legislators. HFGF is part of the Bleeding Disorders Coalition of Florida and is here to help you advocate for the bleeding disorders community legislatively. Contact email@example.com if you’re interested in getting involved legislatively.
HFGF has a social worker and outreach nurses on staff to help you advocate for yourself. Contact firstname.lastname@example.org for assistance. Click here for a list of Florida Hemophilia Treatment Centers.
The Houvouras Family
Hometown: Father – Palm Beach Gardens | Mother – Hackensack, New Jersey
Involvement with HFGF: 14+ Years
If you are attending the Hemophilia Foundation of Greater Florida’s Red Party January 18 at the American Muscle Car Museum to ring in 2020, be sure to say hello to the local Houvouras family.
Residents of Vieira, Andrew and Rayna are the parents of Kooper, 14, and 16-year-old Preston, who was diagnosed with Hemophilia A at age 3.
“I want Preston to get more involved with giving back,” says Andrew, who says they first reached out to the Foundation after Preston was diagnosed. “It will only be another two years before he is going off to college.”
As a baby, the undiagnosed Preston, now a junior at Cocoa Beach Jr./Sr. High School, almost lost his life from a nosebleed in 2007. At first, doctors believed surgery would cure his nose bleeds, but that was unsuccessful. A pediatrician then informed Andrew and Rayna that in the absence of trauma, their son was showing signs of three ailments: Leukemia, a brain tumor or a bleeding disorder. He was tested for all three.
Andrew and Rayna recall that receiving the news at Arnold Palmer Children’s Hospital in Orlando that Preston had Hemophilia was a sense of relief. Even more positive was that Preston had moderate Hemophilia A (4 percent of clotting factor) and would not need to infuse.
“It was the lesser of three evils,” says Rayna, who adds there is no history of Hemophilia in the family. “We were dealt the best hand we could have asked for,” adds Andrew.
Preston, who knows of no other life than having a bleeding disorder, has lived a pretty normal life. As with any child diagnosed with a bleeding disorder life was a bit nerve racking at first.
“I bubbled him when he was little,” says Rayna. “But I knew how important it was to let him live the life of a normal kid.”
Growing up, Preston learned coping mechanisms from his parents—Andrew is a behavioral analyst and Rayna a mental health counselor—and he understands that in the scheme of things, he is lucky. He knows others have a tougher road to haul, including a friend who has Type A diabetes. And while he may not be able to participate in contact sports—at age 11 he wanted to play soccer, but that was negated unless he wanted to begin infusing—he turned to swimming and baseball, the latter of which he hopes to turn into a career. The lanky six-foot-tall lefty pitches and plays first base for the high school’s varsity team. An A student, Preston is enrolled in the school’s IB program.
“He is super busy, super active, and super healthy,” says Andrew. “He does not let Hemophilia define him.”
While he still may bleed spontaneously, it only occurs through the nose, which avoids any joint-associated complications. Nonetheless, the bleeds can occur up to four times a month.
“Every single nosebleed is just as scary as the first one,” admits Rayna. “It can alarming.”
Determined to become more involved with giving back and helping out the Foundation, Andrew is planning to launch Hits for Hemophilia, in which money will be donated for base bits accumulated by his sons. Preston’s brother, Kooper, is a well-rounded ball player as well.
“We have always had great support, especially when Preston was younger and we didn’t really know much about hemophilia,” says Andrew. “We consider ourselves lucky.”
Wendy Wei and Family
Home Country: China
Involvement with HFGF: 11 years
Wendy Wei and her family have been involved with the Hemophilia Foundation of Greater Florida for almost as long as they have been living in the United States. Wendy and her husband Eugene emigrated from China in 2005 to Gainesville, and soon thereafter welcomed two sons, both diagnosed at birth with Hemophilia A. Wendy was aware she was a carrier; bleeding disorders are present on her mother’s side of the family.
After Andrew, 11, was born with moderate Hemophilia A, she and her husband reached out to the Foundation. Three years later, Kevin, 8, was brought into the world with severe Hemophilia A. Both boys require twice-a-week infusions.
Beyond living with a bleeding disorder and requiring factor, Wendy says the boys are very well-adjusted.
“Sometimes they get sad, but then they are fine,” she says. “They are pretty good kids.”
Andrew is now in the fifth grade, and Kevin is in second. Both have joined swim teams.
The boys have also taken a liking to the Foundation’s Camp Spirit at Camp Boggy Creek. Andrew has been to camp three times; Kevin attended for the first time last year.
“They love it!” Wendy exclaims. “They like the activities and the volunteers. The boys have super fun. I feel they are pretty comfortable at camp. They see that they are not the only ones in the world with this disorder.”
Wendy says the four of them also participated in a family retreat weekend at Camp Boggy Creek.
The entire family are regulars at the Gainesville Gator Clot Trot as well, scheduled for March 23 this year. Wendy says she is also thankful for all of the education offered at special events sponsored by the Foundation.
“I am so grateful for the speakers who share the newest information and studies concerning bleeding disorders,” she says.