It is rare to meet someone who has hemophilia that is grateful for it and the opportunities it has brought to their life. Vohn Dumdumaya was diagnosed with Severe Hemophilia A at seven years old after a tooth extraction which caused excessive bleeding. Although Vohn was diagnosed fairly late in life for a person with severe hemophilia, his parents Stan and Jenny Dumdumaya, are extremely thankful there weren’t any major incidents prior to finding out. He was born in 1992, during a time when hemophilia had recently become safer to treat and easier to manage.
Vohn’s parents were very proactive in his care, and became very involved in the hemophilia community. He owes all of his success and ability to manage his hemophilia to their support and active role in his life. After he was diagnosed, his parents did become over protective; Vohn wore a red baseball helmet to school and wasn’t allowed to play sports. The hospital was only a mile from their home, so he and his parents walked there for treatment every other day. Vohn’s two younger siblings, Angela and Jaden, are not affected by hemophilia, but are also active in the community.
Although Vohn was told he couldn’t play sports after being diagnosed with hemophilia, he had already been playing golf since age two. He was very relieved when his hematologist actually suggested golf as a way to stay active, so he was able to continue playing. He played in a fundraiser tournament hosted by an industry leader in the hemophilia community and was the first patient to win the tournament. Vohn was ecstatic to be able to support the hemophilia community by doing what he loved. He continued to play golf throughout high school and into college. He was always known as the kid who had hemophilia and played golf; he says he loved and embraced that description of his life.
Once Vohn arrived at college, he found a new outlet to stay active that he had been interested in for quite some time. He joined a hip hop dance group at Sacramento State and began dancing competitively. He had been interested in dance since seeing a dance group called the Jabbawockeez perform on a reality dance show when he was younger. He eventually joined a private dance group called Press Play, who coincidentally was run by the group he saw perform on tv. Vohn graduated from college in 2015 with a degree in Public Relations and a minor in marketing. He no longer dances competitively, but still uses it as a way to stay active.
Vohn is a co-owner of a video production company and photography business. He is also a patient educator for Octopharma and trains his younger brother, who is a competitive golfer and a Gold Medalist in the World Junior Olympics. His dad coached him during his time as a young golfer, and enjoys being able to coach his brother alongside his dad now.
Vohn is thankful his parents were strict during his treatment as a child, because it taught him to be diligent in his prophylaxis once he began self infusing at twelve years old. He also knows that contributed to being in such great physical health for someone living with severe hemophilia. His parents constantly inspired him to be positive and take control of his hemophilia. Vohn’s Dad always taught him not to let hemophilia win, as long as he was being active, he could control his health.
Vohn wants other young hemophilia patients to know they should listen to their doctors and take care of their bodies. You can make yourself stronger and overcome the negative effects hemophilia has on your body. Staying active was the key to a positive life for Vohn. He suggests all young hemophilia patients find an outlet for physical activity that they enjoy, it will inspire others in the community and keep their joints healthy.
He has amazing goals to get hemophilia awareness and education into mainstream media. Vohn wants the world to realize that hemophilia isn’t just a bleeding disorder. The community is filled with inspiring people who have overcome unimaginable circumstances. He knows that by doing this, he can also bring more supporters into the community. Vohn knows he was meant to be together with hemophilia. It has brought him opportunities and relationships he wouldn’t have had otherwise. He cannot thank his parents enough for molding him into the person he is today and teaching him that hemophilia can’t win as long as you are taking control and living a positive life.