June 2005 | Belize, Central America / Ed Sotherden

When I was young, I never dreamed that I would be as healthy and independent as I am today. I never in my wildest imagination believed that I would spend a semester living under the canopy of the Belizean rainforest. Had you suggested I would make it over ten years without being in a sling or on crutches, I probably would have laughed. That I would relocate to a big city where I had no contacts? Not a chance, yet all of these define my life today.

In the fall of 2000, I packed up and headed to Belize, Central America for a semester of classes and travel. That was a defining time for me as an adult with hemophilia.

Growing up I had always had joint problems of some sort, but I always had access to proper medical treatment. In Belize, should anything serious occur, the plan was to Medevac me to Miami. Because of my good health, I hadn’t been on prophylaxis treatment since early in high school. In Belize, I would treat prophylatically based on the amount of activity during a particular day. Throughout the semester I went on ten-mile hikes, a 32-mile canoe trip, spelunking in caves and cliff jumping. The entire time, my only issue was a bleed in my toe that lasted a couple days.

I had two major eye opening experiences while I was there. The first was a hurricane that forced us to evacuate inland. Although I was safe, transportation in and out of the country was on hold and I was starting to run low on factor. I made it last until more arrived, but it was my first experience with the possibility of not getting treatment. The second experience was coming in contact with a mother of two Belizean boys with hemophilia who were getting no treatment. Although I never met them, through phone calls and e-mails I was convinced that I needed to somehow help these kids. When I returned to the states, I was able to put the family in touch with the beginnings of what has become Project SHARE. These boys have received the medicine and treatment they so badly needed.

That semester in Belize gave me the confidence that I could live a very normal life. I now live in the city of Philadelphia and am employed in the hemophilia homecare industry. I am thrilled to be more involved than ever in the hemophilia community and I’m looking forward to both learning and helping others.

As I was spared growing up through the era of the 1960s and 1970s, kids today have been spared growing up in the era of “as needed” treatment. With home infusions and prophylaxis treatment, the kids of the new millennium may never have to use slings or crutches. As many of us are being informed by our vigilant consumer watchdogs, our medical benefits have come under the frugal eye of insurance companies. Let’s not go back in time, let’s keep moving forward in this future of healthy children. Stay informed on the current issues and be proactive in protecting this community’s rights. Also, while we fight to keep our standard of care, remember that this is not the standard of care the whole world over. There are still people with bleeding disorders across this globe who are getting little or no treatment.

Back to Ed's page.