Becoming a hemo wife

• Tell me about your hemophilia story. 

My hemophilia story began in 2008 when I met my best friend, Kane! We were unaccompanied minors that shared the same connecting flight. We ended up going to the same music camp for the summer! Since we lived in different states, after camp, we friended each other on Myspace to keep in touch each other! During camp, he briefly mentioned that he had Hemophilia, but I had no idea what that meant at the time. He use to post videos of when he would infuse himself for a bleed and it was scary! I had an unhealthy fear of needles, so I never made it all the way through the video.
In 2011, we started dating. Then in 2015 we were married! All throughout our years of dating, his hemophilia was never an issue because we lived in different states and were rarely together during his bleeding episodes. A few weeks into our first year of marriage, Kane had an accident at work and was unable to walk for a few days because of a bleed. He was fired from his job shortly after for missing too many days without a doctor’s note. This was the first bleed in all of the years knowing each other that I was able to witness. This is when his hemophilia became real for me. After our long struggle with getting his health and medical record on track, we are now managing his hemophilia, instead of his hemophilia managing our lives! 
Being the wife to a hemophiliac has shaped my career path to patient advocacy in the legal field. Sharing the challenges we have faced during these last five years of marriage on podcasts and similar outlets, has only solidified my passion for our hemo family. This is what keeps me excited to see where our hemophilia journey leads us!

• What was it like to go through the learning process of hemophilia? 

We actually learned about his hemophilia together! He did not have stability or a local HTC growing up, so he knew just about as much as I did. It was hard for both of us emotionally. He was not very well educated in his own diagnosis, and I was still learning myself. It was very discouraging at times. When I called the hospitals and doctor's offices that treated him when he was a child, a majority of the records had been destroyed during Hurricane Katrina. His adolescent medical records lacked consistency and many years of information were missing. It was very difficult getting him established without the original diagnosing medical records. Since he had no insurance, we could not afford the tests to get diagnosed, nor able to get time off of work to take the tests necessary to get a new diagnosis. Over the last 5 years of our marriage, we have learned the ins and outs of his hemophilia (so far), and we have done it the hard way. However, I am so glad that we learned it together. We have been each other’s sounding board, and I know that his hemophilia diagnosis has brought us closer together.
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