Jambo from Kenya! I have been having a hard time writing a blog post about my time here in Kenya. There are so many incredible stories, I hardly know where to begin. Overall, the lab that I have helped set up here is running amazingly well! They have been running bleeding disorder screening tests and factor assays on a consistent basis, but more importantly, accurately! They have been working hard to make sure all the results going to the physicians who are seeing these patients are the best possible. I am so proud of how far this has come in the few years we have been here. We are still working on the tally for how many patients we have lab-confirmed hemophilia diagnoses, but it is approaching the 200 mark with almost 500 possible patients identified. We still have a long way to go to diagnose the 2,700 presumed hemophiliacs in Kenya, but what a start!!
It's been so great being able to see the first infusions for some of these guys and personally knowing the kind of relief factor can bring to a bad bleed. I love that we are able to give that to these guys, but an issue that is all too well known in the states is now beginning to rear its ugly head here. Today we confirmed in the lab, probably for the first time in Kenya, that a young boy has an inhibitor. Talk about an emotional roller-coaster. I was really excited that our lab can now identify inhibitors, but what will this boy do now? He is already fighting an uphill battle struggling to survive with this condition and now you throw this on top. I’m so glad we were able to identify, it but I am truly worried about this boy.
Today also brought the diagnosis of severe hemophilia A in two more boys. One came back to the clinic today where I saw him struggling to use his new crutches. His left knee was massive and he hasn't been able to stand for months. He had been carried by his mother the entire time and his body had slowly degraded. As he struggled to move to his wheelchair, I could see the pain in his eyes. I know that pain, or at least close to it, and I desperately wanted to be able to take it away. It’s times like this that I feel undeserving and confused. Why do I get to be healthy and mobile and able to travel the world when this amazing, resilient, inspiring young boy suffers? I know the answer is simply that I was born in the right place, but it doesn't take the feelings away.
The greatest pride I have in this amazing program is that we can help, and are helping. The care is in no way close to that we have in the states, but it is improving exponentially. There are some incredible people here that I am proud to call my friends, and that donate their time to help my blood brothers. I am so thankful for these people.
I know this has been an emotionally charged post but I had to let loose. On a lighter note, I want to tell you another story about the boy struggling with crutches. Apparently when the word crutches was mentioned he didn't want anything to do with them, but when Chris and Tiffany, program director and physical therapist respectively, brought in the bright, shiny, brand new crutches he was all about it! He finally felt he independence of being able to stand and move on his own after months of relying on others to carry him. It was a huge step for him and hopefully he will keep making be steps, figuratively and literally.