Winter 2007 | Making a Difference - HFA's Ted E. Bear Hospital / Judy Igelman

For several years I have worked closely with a few children’s programs in the bleeding disorder community. Much of what I know about hemophilia I learned from my son. My son, Matthew has spent the last 22 years growing up with severe factor 8 deficiency and a history of an inhibitor. When he stopped listening to me (and they all do), I decided to pass on to other children what I had learned from him. In 1999, I was blessed to become involved with the Hemophilia Federation of America (HFA.) I found that HFA and I shared the same interest in helping others with bleeding disorders.

One of the most predominant lessons my son taught me was that he did not want hemophilia to make him feel “different.” He would say, “Other kids have this, they just don’t go to my school.” I sought to create an environment where children with bleeding disorders and their siblings could meet and get to know one another. The HFA children’s program grew from their Annual Symposium in Houston, Texas in 2000. We created an open forum where children with hemophilia get to hang out with other children that share the same disorder. I have always felt that the opportunity to know that others are like you offers reassurance to young people. It helps build their confidence knowing that they not alone; that they are not “different.”

Another lesson my son taught me was the need for empowerment. Once as a patient at UNC-Chapel Hill Treatment Center, he got the chance to play the role of doctor. This play therapy situation seemed to empower him. For that one moment he was not just the patient, he was the doctor. I learned just how important this feeling was for my son. As a fifth grader, while facing a life-threatening bleed, he was put in a position of participating in an impromptu in-service training for the Emergency Medical Services crew that was called out to assist him. My son was able to discuss his health issues with these adults and actually teach them as he saved his own life.

Children who live with medical issues like hemophilia have knowledge that most adults never will. Being allowed to display their knowledge fosters feelings of empowerment and helps to lift their self-esteem.

Out of this need grew the Ted E. BEAR Hospital. Ted E. Bear Hospital is a program whose goal is to help children with bleeding disorders feel better about their lives. It creates an environment where the patient becomes the doctor. It gives our special children an outlet to display the knowledge they possess. The program involves having a child take a bear to the “hospital” to treat him for his bleeds. The children become part of the team, displaying their knowledge of what to do after a bleed, from infusions to applying ice, to wrapping joints; all the things they have to go through themselves. Helping a child achieve this confidence is very important. The child’s self-assurance and sense of worth increase as they feel more in control.

An offshoot of Ted E. Bear Hospital began in 2003 when we started having the children create their own bears. The sharing of “it’s what is on the inside that counts” added a wonderful new dimension to the program. The children are encouraged to place little charms and buttons, which represent various “genes,” into the bears as they are being constructed and sewn.

Another lesson my son taught me is that it is not that you are a “hemophiliac,” it is how you approach and feel about it that actually matters. Part of the message of Ted E. Bear is to teach the children that yes, they have a “gene” for hemophilia, but they also have a great “gene” for music, running, swimming, drawing, or whatever else interests the child. The focus being on what they can do, as opposed to what they can’t, empowers them. The children really enjoy creating their own patients, often becoming very engrossed in the process. One child touched me in particular. He insisted on sewing a heart onto the end of his bear’s hand. He wanted to be able to wave his hand and spread his love all over the world.

The hope is that the program makes the children better able to meet the challenges in their lives while inspiring them to make goals for the future. I personally take great pleasure in helping children see that hemophilia is just one small facet of their lives. As I work with HFA and the Ted E. Bear Hospital program, I feel that I am able to make a difference in the lives of the children and the families in the bleeding disorder community. I give much time and energy to this special program. I know my work is well worth what I receive in return. Seeing a child proceed with confidence and a feeling of control over their bleeding disorder is invaluable. I am given a priceless gift.

The Ted E. Bear hospital is a great program for patients and siblings. This is not all the HFA is doing to improve the lives of those with bleeding disorders. The organization continues to reach out with other programs such as Dads in Action. This is an ongoing effort to empower fathers with the support and help needed in raising a child with hemophilia. HFA also has an adult men’s group of hemophilia patients. The men meet together to offer support and camaraderie. It is an excellent way for many men to continue their involvement within the bleeding disorder community.

With all that the Hemophilia Federation of America offers, I hope you have the opportunity to attend their next educational symposium in March 2007, to be held in Albuquerque, New Mexico. I look forward to seeing you there!

Back to Matt's page.