My name is Lisa Bordelon. I am married to Kevin, retired MSgt., USAF and I have two young adult children, Ashley and Matthew. Both are diagnosed with von Willebrand Disease. Ashley has Type 1 Severe and Matt is Type 1 Mild. Ashley was not diagnosed until age four. Being in the military, you have many different doctors. I got tired of being accused of beating my child. Ashley was always covered in bruises, not to mention nose bleeds all the time that was diagnosed as allergies. After screaming and yelling, I finally convinced them to do some simple lab work. To their surprise, it was all abnormal and we were quickly sent to specialists. To be honest, I knew nothing about bleeding disorders, but was relieved to have an answer for all the bruising.
We learned about the chapter after moving to South Carolina from Iceland in 1998. Our first experience was attending family camp. It was great to finally learn about bleeding disorders from people that had experience as opposed to the internet which by that time, even with two children now diagnosed, was the only education we had had.
The best part of the Chapter was that we were accepted for who we are, no questions asked. The Chapter really impacted the kids. They met others like them with the same questions and concerns. My kids grew up with the Chapter, learning as they grew. Ashley was always involved, starting with working with the kids at age 12, while Matt who ran away at our first retreat (we found him calmly watching fishermen on the pier) came to know and care for his blood brothers, as they called themselves. Matt and Ashley have grown thanks to the Chapter with an increased knowledge of bleeding disorders and have become advocates for the community.
This all led me
to six years ago. The Chapter was going through growing pains. I made the
decision to give back to the Chapter we had learned so much from, to the
community that had become our extended family. As President, then Vice President,
I had the opportunity to travel to NHF regional meetings, and chapter
leadership conferences with chapters from all over the country. We
learned what worked for other chapters to increase bleeding disorder awareness
and ways to help our Chapter grow. We would bring these ideas back and share
with the Board of Directors. Slowly over time with hard work, Hemophilia
of South Carolina grew into a Chapter of Excellence. A place of community
support and education.
I enjoyed
sharing at meetings, conferences and retreats. Making the public more aware of
bleeding disorders was, and always is, my goal. As a nurse I especially
enjoyed educating school nurses from all over the state. And I am proud
to say that if the word hemophilia is mentioned in my hospital–they come
looking for me. I in turn, look to the Chapter to continue to educate all who
will listen.
As I end my six-year term in June, 2019, I look to others in the community to take the time and effort to give back to the Chapter that gives so much. We need to continue to change the world, one person at a time. Through our Chapter the community finds support, education and above all love. I thank you for giving me the privilege of serving you.
Lisa Bordelon
