Someone once wisely observed that success and fulfillment in life was principally achieved by just showing up. Never much of a people-person, I had generally avoided showing up at very much of anything over the course of my life. Perhaps that was due in some measure to having been born with severe hemophilia A in 1965.

I had grown up in a rural area with no local hemophilia treatment center, no summer camps, and perhaps most notably, no factor concentrates. Years of repeated knee hemorrhages had often resulted in days spent inside reading or studying music. Limping my way through childhood often resulted in the inevitable teasing from other kids. “If I cut you, will you bleed?” was a common refrain. I learned to avoid situations where I would have to talk about my bleeding disorder and began to prefer my own company or the company of my family.In 1985, AIDS entered our lives. I was tested with my brother and brother-in-law as were thousands of other hemophiliacs.

After being advised that the risk of AIDS was “minimal,” we had continued using factor concentrates and each of us tested positive for what was then referred to as HTLV III, later renamed HIV. Pat, my brother-in law, was gone by 1990. AIDS was never mentioned at his funeral. My brother, John, survived a paralyzing stroke in the same year as his HIV diagnosis. When hearing the news from the man in the white lab coat that “you’ll probably die within three years,” what does one do at the age of 19? At a time when most are planning their careers and looking forward to marriage and a family, I found myself asking some very difficult questions. What would I do with whatever time I had remaining? Who would care about someone like me with a dreaded and lethal disease? Did I even want to live in a world that sometimes treated AIDS victims by terminating them from their jobs, firebombing their homes and denying them medical care in hospitals?

There were many questions and no answers. Like many others, I simply made the best of things and prayed that a cure would be found. I pursued a career in music as a trombonist, which eventually led to some national tours with Broadway shows and the Tommy Dorsey Orchestra. I had the opportunity to perform with Bob Hope, Perry Como, Rosemary Clooney and many others. I eventually left the music business, as health insurance is a little hard to come by when playing the trombone for a living.

At the age of 30, still surviving HIV and hepatitis C, I decided to settle down and get a day-job. Although society’s attitudes toward AIDS and those living with HIV began to slowly change over the years, I still found it very difficult to confide my medical history to anyone. In a 25-year period of time I told no more than a dozen people about my HIV status. However, things changed dramatically for me in 2007. My brother passed away. He lived a courageous life until liver failure from hepatitis C took him from us in 2007. Other than a friend in California, my brother was the only other person with hemophilia in my life. During the time that my brother was still in the hospital, I began Interferon treatment for hepatitis C. I did not respond to my initial treatment attempt and for the second time in my life, doctors told me that without a liver transplant, I would not live much longer. My experiences in 2007 resulted in many changes in my life. I began to show up. I resolved that whatever the outcome, I would not depart this world quietly…

Barry Haarde

Haarde, B. (2010). Dedicated to Making a Difference. Matrix Health News, 5(4), 13-14. Retrieved from https://www.matrixhealthgroup.com/NFall2010.pdf

Hemophilia of Indiana had the wonderful pleasure of hosting a World Hemophilia Day event in Elkhart, Indiana on Tuesday April 17th. We could not have asked for a better night! We want to first thank all the members of the organization for coming out to celebrate this day of awareness with us. The turnout was above and beyond what we could have hoped for. We are so excited to continue having events in that part of the state. Next we want to thank William Black and Baxter for sponsoring the event. It would not have been the same without such great support! Also we would like to thank Antonio’s Italian Restaurant for providing a location for our event, as well as a delicious meal.

At the event, nurse Lisa Bowman, from Indiana Hemophilia and Thrombosis Center, presented a Fact’s First program. This program, “Emergencies Happen,” educated those about safety when it came to taking a trip to the emergency room, and also safety precautions those with bleeding disorders should take on vacations or day trips. The presentation was outstanding, and each person in attendance definitely took away something they did not know before. Thank you Lisa for your time and informative talk!

World Hemophilia Day only comes around once a year; however, we cannot let that be an excuse for us to stop raising awareness. As advocates for this disease, we must continually educate those in our community about bleeding disorders. Many are unaware of what bleeding disorders even are, including some of the doctors you may see in the ER. We will continue to fight to help those in the bleeding disorder community and we will find a cure, but we ask for your help to do so.

Again thank you to everyone at Baxter and Antonio’s for helping put on the event. Thank you to Lisa for providing wonderful information. Finally thank you again to all those who came. We look forward to seeing you all as we continue to have more programs in Northern Indiana.

 

In honor of Hemophilia Awareness Month, Hemophilia of Indiana held its 2nd Annual “100 Frames for a Cure” Bowling Marathon, on Sunday, March 25 at Royal Pin Woodland Bowl.

Similar to a walk-a-thon, this 100 Frames of Bowling Marathon – features sponsors who donate money per bowling frame played. For example .25 per frame equals $25.

Last year, we had 7 teams participate, raising almost $8,000. This year we had 12 teams, with over 40 participants, raising almost $25,000!

Proceeds will go to HoII’s Project Lifeline, which helps over 1,200 people and families throughout Indiana, who are impacted by bleeding disorders.

A big THANK YOU to our sponsors, donors, and participants, who helped make this event a HUGE success!

 

I remember the first time I heard about hemophilia. I was 6 years old and my little brother was born. I had to hold him under a pillow because he was “fragile.” My little brother was a “bleeder”. All I knew was that I had to be extra careful with him.

When my brother was born, my mother learned that the generation-old family rumor about a “problem with the blood” with the boys in our family was true. Looking at our family tree, we knew many little boys did not live past toddler years, including my mom’s own brother. But no one talked about it. When my newborn brother’s routine heel stick was oozing for hours afterwards and the diagnosis came, our family secret was out.

Growing up the big sister, I treated my little brother like any sibling would. Yes, we played. Yes, we fought. Yes, we did things that we knew our parents would never approve of like roller skating, climbing trees, and being dare devils. My brother just happened to get medicine in his arm or hand a few days a week and wore padding until elementary school. I never thought we were different.

When I was 12, the realization that I too was a bleeder hit home when I had my tonsils taken out. My best friend in elementary school had hers taken out first, and she got lots of ice cream and was back in school in no time. “It was easy!” she said. But when it was my turn for a tonsillectomy, I came out of surgery and kept BLEEDING. It didn’t stop. I went back twice to the hospital and it still didn’t stop. I was scared. The doctor told my mom that it wasn’t possible “for girls to get it.” My mom fought back. She fought to get me factor so that I would stop bleeding. I now understood why my mom fought so hard to advocate for us kids in a time of fear and misunderstanding in the late 1980s. There were lots of uncomfortable questions for my young mind – Would I get sick like all other kids at hemophilia camp? Would my brother and I die? What is hemophilia? And would I give it to my kids one day?

Preferring not to focus on the hard questions, my teenage and young adult years were spent much in denial at the time about my own bleeding issues. I went off to college to study dance and then launched a dance career. All ballet dancers’ joints hurt now and then, right? Joints swell when you dance too hard, right? I hid my bleeding history because in the ballet world, if you were weak or injured, you were passed over for the next girl. And so I wasn’t a bleeder like my brother. I just had heavy periods. Girls can’t get it.

This thinking pretty much continued until I was pregnant with my first child, who happened to be a boy. I now had to face hemophilia head on. We had a smooth, unmedicated (except for my factor) delivery, and within 24 hours my son was diagnosed from cord blood testing. But I knew he had hemophilia when I took off the Band-Aid from the heel stick administered three hours prior and saw it was still oozing with blood. I just smiled, put a new Band-Aid on, and accepted that this thing called hemophilia is not a curse but a gift that was going to be in my life for a long time to come. I was given this in order to be a living example how hemophilia is not a disability, but something that you can live with and honor the lessons it teaches about being stronger person.

I went from sister to bleeder to mother. In the end I discovered that hemophilia is something that binds us together—all our fears, hopes, and dreams for our families and ourselves can be fully realized despite the fact we don’t make a particular clotting protein.

Welcome to the brand new blog for Hemophilia of Indiana Inc. We are excited to have this oppotunity share what is going on with HoII, but also the stories and experiences of all our members. Our staff and members will be posting regularly, so make sure to keep checking in order to stay up to date with everything! Feel free to subscribe to the blog by entering your email into the area on the right. We look forward to hearing from everyone. If you would like to share a story, please contact Gavin Freeman (gfreeman@hoii.org) and he will make sure to take of posting it.