Bleeding Disorders Awareness Spotlight: Mikey

Bleeding Disorders Awareness Spotlight: Mikey

What motivates me in my bleeding disorder is being able to give back, by going to camps and events that take place in the bleeding disorder community.

1. Tell us about yourself.

My name is Michael Hernandez and I am a 22-year-old male with severe hemophilia and a history of inhibitors. I live in Hollister CA, with my girlfriend and two sisters. I am currently going to college full-time to do something in the medical field. Ever since I was a little kid, I have always wanted to work in the medical field. I recently got a job at a homecare company and am really loving it. I am very involved in the bleeding disorder community; it is my second family.

2. When Did Your (or your loved ones) Bleeding Disorder Effect You The Most?

My Bleeding Disorder affected me the most in Middle School. I would have a major bleed at least twice a week, either in my elbows, knee’s, or ankle’s. I missed a lot of school due to these bleeds and would spend weeks at a time in the hospital. So that was really hard to do all my homework and materials that were needed for school. Kids would always ask me why I missed so much school and I was kind of scared to tell them I had hemophilia. It was hard for my mom and grandma also because they would stay with me in the hospital and take me to all my appointments which were at least once a week. They would have to miss a lot of work, which was hard money wise because Stanford is an hour and a half away. It always affected my sisters and cousins by seeing me always hurt, not being able to walk, or even do things by myself, like getting dressed. This even went on into High School, which made it tough for me to graduate. I stuck it out but my senior year was hard; I completed almost 3-semester credits all in my senior year. Due to all the bleeds I have developed arthritis in my joints and it is very painful.

3. What aspects of your (or your loved ones) bleeding disorder inspires and/or motivates you?

What motivates me in my bleeding disorder is being able to give back, by going to camps and events that take place in the bleeding disorder community. Volunteering is my favorite thing to do to give back. I get the chance to meet new brothers and sisters with the same disorder as me. I love seeing all the little kids have a blast at camp and they have no worries what so ever. You get to make lifelong friends and build great relationships with them. I still keep in touch and hang out with a lot of my friends I met there. Also, getting the chance to travel and go sightseeing while attending events is a huge plus. We get to be like normal people and do things that people say we can’t do; that’s what motivates me.

4. How do you give back to the community?

I like to give back to the community by volunteering. I try to volunteer at all the events in the community. I also go to events where you can bring your families and I have a big family. So my family is really involved and I have cousins who volunteer also. I even try to go to all events that happen out of state. I try to do whatever I can to best help out our community. I am very dedicated to giving back to the ones in need.

5. What advice do you have for someone who’s looking to get connected in their local community/chapter?

My advice for someone trying to get connected in their local community or chapter is to go to one event and see how it goes. I am sure that one event will make you want to come to all the events. I suggest to network and get people’s contact information and keep in touch. They even have groups specific to females and males, which would be very helpful to get plugged into the community. They are smaller groups so you can have a more one-on-one conversation. For the kids, they have a lot of summer camps and events throughout the year so they can meet new friends and counselors. If you have no information at all about your local chapter it would be a good idea to ask your HTC. They should have information on how to get involved. Once you are involved, I think you would really like it and would have no doubts.

Mikey - Bleeding Disorders Awareness Month

Patient Advocate and College Student, Mikey, shares his story and gives us some advice on how to get connected in the bleeding disorder community.

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