Getting to know what resources are readily available to your family is very important. One of our best resources is our local hemophilia treatment center, which is great.
When Alex was born, we had only been home from the hospital for one day when the HTC sent a whole multidisciplinary team to visit us, including a social worker (Jan), a genetic specialist (Robbie), and a nurse (Sandy). The first thing I thought was, “I don’t need a social worker just because my child has hemophilia.” Well, you know what? We couldn’t live without Jan. She’s absolutely great. She’s been a valuable resource for us. She recently helped my daughter, Kristin, prepare for college.
The people from the treatment center obviously know our family very well. Alex has had the same physical therapist, Dave, since he was born. We also rely heavily on Joanna, the nurse practitioner. She works closely with us on day-to-day issues, while the HTC physician, Dr. Thomas, helps with the more unusual items. We also cannot live without Tammy—she is the insurance and paperwork lady!
The team knows our history and they know Alex’s bleed patterns, which is really important. For instance, Alex has a lot of soft tissue bleeds, rather than joint bleeds. When you think he doesn’t need to infuse any longer, he could end up infusing for two more weeks. We call it “the Alex margin.” If we went to different doctors all the time, they wouldn’t know the Alex margin. We could be treating a bleed for six months that should only have taken maybe two months to treat.
Jan even helped us a while back in getting Alex to preschool. When there was a conflict with the school, Jan intervened. She made a couple of phone calls on our behalf, and then the school called us and told us what day to be there. Jan is enormously resourceful and helpful about getting information to us.
Later, when Alex went to grammar school, we went through a period of having to educate his school district about hemophilia. Once again, our HTC was very helpful. Sandy and Dave from the treatment center went to the school and held classes for the teachers and the students to educate them about hemophilia. We think our local treatment center is great. If your child has hemophilia, you should become familiar with and take advantage of the resources your HTC has to offer.