By Antonella Pastor
Devin Corona, a sophomore at the University of Nevada, Reno, begins to roll up his sleeves as he walks into his apartment. The 19-year-old reaches into his refrigerator and grabs his factor, a thick, clear syrup of medication that used to treat the blood clotting factors that are missing from his body. Corona has hemophilia, a disease that prevents his blood from clotting and can lead to bleeding episodes as a result of even minor injuries.
This routine is more than familiar for Corona, who has been injecting his own factor since he was 8 years old.
Corona walks into his room, shuts the door behind him and positions himself at his desk. Two bottles of saline, two syringes, two needles and one bandage takes the place of what was once a pile of his college homework and books.
The syringe slowly sucks in the liquid and Corona carefully makes sure not to get any air bubbles inside of his veins. Corona takes his armband and wraps it firmly around his bicep. As the green vein starts to peek through his skin, Corona injects himself, the cold liquid weaving itself into his bloodstream.
Months after they were born, Corona and his twin Daniel were diagnosed with hemophilia, a genetic disease often carried by mothers. Usually, mothers are aware that they carry the gene for hemophilia, but this was not the case for the twins’ mother, Debbie Sambrano.
The twins were what medical professionals call “a spontaneous mutation,” meaning that they were not predicted to have the disease.
The family first suspected that something was wrong when the twins were newborns. They noticed that when someone would pick one of them up, they left traces of hand and finger marks that eventually became bruises.
Another sign showed itself after the twins were circumcised.
“Their circumcisions didn’t heal well,” said the twins’ father, Ian Corona. “I mean, every day changing diapers looked like a murder scene.”
After the twins visited their doctors when they were several months old, they were sent to the UC San Francisco Hemophilia Treatment Center, where they were diagnosed with hemophilia.
Soon after they returned home from San Francisco, Daniel began bleeding profusely and was rushed to an emergency room, but the doctors were slow to call the Corona family to update them on the condition of the twins. Instead, Ian felt that the doctors were preoccupied studying Daniel for scientific purposes.
Ian said that this experience made him realize he had to actively search for answers himself instead of waiting for doctors.
At the age of 2, Daniel fell while playing at an anniversary party. The fall caused constant vomiting throughout the night. In the morning, Daniel would not wake up and was non-responsive. The Corona family rushed him to an emergency room. A brain hemorrhage sent him into a coma for two months.
Two months passed in an Intensive Care Unit, and the Corona family decided to take him off life support to see if he could sustain life on his own. Failing to do so, the family brought him home so he could pass peacefully.
Daniel died days before his third birthday.
Like Father, Like Son
With very little knowledge about the disease that had affected his family, Ian found himself attracted to a different field. Ian spent a majority of his life working for Wells Fargo. He had a lucrative career, insurance, a comfortable paycheck and a nice retirement fund.
After finding out that his 9-month-old twin boys were diagnosed with hemophilia, Ian left it all and switched to a completely different route in order to protect his children. He thought that the only way he could do so was by learning all he could about his sons’ disease.
Ian spent all of his free time and vacation days dealing with things involving hemophilia, such as informing himself about the right medications, the appropriate treatment options, and teaching himself how to adapt to this new lifestyle. The Nevada Hemophilia Foundation noticed this during the first few years of his sons’ diagnoses and the foundation recruited Ian as their new executive director.
“It didn’t take me a long time to accept leaving, it just took me a long time to get over the fear of what’s going to happen or what’s not going to happen,” Ian said.
Ian is currently the national specialty accounts manager for Factor Support Network Pharmacy which primarily targets bleeding disorders such as hemophilia and Von Willebrand.
With his father working and Corona dedicated to maintaining his health, together they form a duo team that helps each other enhance their strengths and weaknesses.
Although he has moved out of the house, Corona and his father manage to make time for each other and see each other regularly. Ian also still accompanies Corona to the doctor’s office, not because Corona can’t do it on his own, but because they enjoy each other’s company.
“He’s been a really big support ever since I was a baby,” Corona said. “He’s really helpful. If I have any questions about anything, he’s the first person I’ll go to.”
Don’t Hold Back
Ian said that most people believe the only way for a hemophiliac to avoid a major accident would be to stay in a bubble, to watch as the seasons change from a bedroom window, wishing to be outside playing sports or hanging out with friends.
Even with Daniel’s passing, Ian doesn’t believe in this kind of philosophy.
“I spent a lot of time debating doctors and debating the industry about that and I really thought it was best for me to be the support system and make sure [Devin] learned what he had to do to be healthy and then live him life and I still firmly believe that,” Ian said.
Corona has been told by doctors all of his life to refrain from participating in certain physical activities, such as sports, since they could lead to an injury. Instead of following the doctor’s recommendations, Corona’s family looked for alternatives that would allow him to live a happy and active lifestyle.
Corona has participated in multiple sports throughout his life that weren’t suggested by doctors with his condition, such as soccer, Tae Kwon Do, cross-country and CrossFit.
Corona is able to do this because he and his father make sure his factor levels are healthy before engaging in any of these activities.
“[My dad] doesn’t ever want me to hold back if I want to do something I’m not supposed to do, he just tells me this could be the outcomes and the consequences if I do do them, but to do them, I have to infuse,” Corona said. “He tells me I need a plan for everything.”
As long as Corona remains infused, Ian said that he believes Corona will be just fine, living a normal and active lifestyle. He would want nothing less for his child.
“He’s never been restricted from doing anything,” Ian said. “We’ve traveled, he’s done all kinds of sports and activities, and he seems to be having a normal fun time in college. I think he’s going to be alright.”
The Miracle of One
Corona’s daily routine includes injecting himself with factor three times a week to decrease the potential of a bleed and live his life as normal as possible. Bleeds occur when blood starts to gather in a part of the body, most commonly in the joints, and begins to swell. This cause a great deal of pain of the patient.
Twisting or turning the wrong way, landing on something, falling and many other accidents can cause a bleed for hemophiliacs.
“If you bump your hand against a table, your body is already starting to address the bleeding that’s going on underneath the skin,” said Dr. Amber Federizo, Corona’s nurse practitioner. “Somebody with hemophilia can’t address that bleeding so it continues to ooze and bleed and not heal, so the blood continues to collect in that space.”
Corona received his first and only bleed at the age of 17. Corona stepped off of the couch and accidently twisted his knee. Soon enough it began to fill with blood. His knee turned red and swelled to about four times its normal size.
“I couldn’t walk for like two weeks,” Corona said.
Ian said that the annual bleed rate for most hemophiliacs ranges between 15 and 20 bleeds a year. Federizo said that this is an extremely rare case for a 19-year-old man, but she thinks Corona is fortunate because he always keeps up with his factor replacement therapy and maintains his factor levels where they need to be, since most bleeds happen when the patient doesn’t infuse as they need to.
Keeping up with factor levels and infusions is vital, and Ian makes sure that Corona is aware of that and acts accordingly.
“I think his dad and him have just done a phenomenal job at ensuring he gets all the infusions he needs to protect himself,” Federizo said.
Living with Hemophilia
Today, Corona makes the day-to-day effort to make sure that nothing is out of the ordinary. He treats hemophilia as just another obstacle of his day to overcome. Ian and Corona have both accepted the life they have been given, and they are taking it with open arms.
Beating the odds of hemophilia is just all a part of Corona’s life plan.
“Some people who haven’t taken good care of their hemophilia, it affects their lives a lot,” Corona said. “To people that have hemophilia: take your health seriously and keep a routine of infusing, that’s the biggest thing. I’m lucky I have my dad for that, he’s always been there and he makes this a little easier. I’m glad I have him.”
Antonella Pastor can be reached at firstname.lastname@example.org and on Twitter @TheSagebrush.