Reemergence of Men's Inhibitor Support

As a person with a rare bleeding disorder, I don't get many chances to meet fellow blood brothers that live all over the country. Myself, and others alike, need programs like the hemophilia conferences. There are conferences for every field that you can imagine. These conferences are very important and are integral parts of the scientific community. Most people do not realize that the scientific community also includes the patients, whether they are rare or not. As exceptional as the conferences are, the experiences of inhibitor patients are vastly different from those who do not have an inhibitor. We need completely different medications and face a unique set of challenges. For example, a patient with mild hemophilia may lead a more relatively normal life due to more stable factor levels. And in turn, he or she may experience fewer bleeds in a lifetime. Inhibitor patients, on the other hand, experience significantly challenging, more frequent bleeding symptoms. I used to get an ankle bleed once every two weeks or so seemingly out of nowhere at times. To learn more about these challenges and advances in the field, Momentum was created several years ago as a program for individuals with an inhibitor to come together and learn from the amazing speakers, as well as each other.

There is a problem in the inhibitor community. The resources once available have dried up since the devastation of the pandemic. We no longer have the inhibitor summits from NHF or any similar conferences. CHES is the only group in the entire United States that provides conferences specifically for inhibitor patients. It all really started with the inhibitor family camps back in 2010 from which I had the pleasure. CHES has been supporting the inhibitor community for a very long time. And today, seems to be the only provider of insights into the advances in treatment and care for inhibitor patients.

More info on Momentum https://ches.education/momentum

Momentum has helped me form friendships that will last a lifetime. And the valuable information it unveiled significantly helped with my advancement as a biology major - specifically, with various projects and my senior comprehensive exams for biology. As a science major, my disorder was really a strength because I could then research it to my heart’s content. It is difficult, however, to do research without a guide of some sort. That is what programs like Momentum provided for me. It talked about topics related to hemophilia that were seemingly unrelated and sparked my interest to investigate further. One example of this is the use of ultrasound and the monitoring of joint health, which was a session given by Dr. Nihal Bakeer of the Indiana Hemophilia and Thrombosis Center. It shows how the advancement of medicine and technology can impact the care provided by the doctor with better outcomes for the patient.

Made possible through the support of:

Besides the science of our disorder, one extremely important aspect is the sense of community. Our community is not very large and is scattered all around the nation, so it is difficult to stay connected. Luckily, events like these enable us to get to know one another and bond with each other through shared experiences. We all are beautiful and unique. It is all about the way we go about it. I now believe that my hemophilia is one of my strengths because of the hardships I went through and the many relationships I made along the way with fellow members of the hemophilia community. We may be of different cultural backgrounds and ethnicities, but one thing will never change. We are blood brothers and that is a bond that transcends boundaries and borders.

Lavang Vu is a senior biology major with a music minor at the university of Dallas in Irving, Texas. His experiences with hemophilia and an inhibitor inspired him to go to medical school in the future.