BOISE, Idaho -- St. Luke’s Mountain States Tumor Institute has received a $90,000 grant from the National Hemophilia Foundation (NHF) for the St. Luke’s Hemophilia Center to help improve the availability of mental health services for hemophilia patients.
In 1996, St. Luke’s became the only hemophilia center in Idaho to offer comprehensive care to people with hemophilia and other bleeding disorders. But the one area that has been lacking in the care of hemophilia patients was access to mental health care. The NHF grant will help pay the portion of a salary for a new psychologist/behaviorist trained and educated in the specific emotional needs of those individuals with bleeding disorders.
Dr. Nick Camilo, medical director of St. Luke’s hemophilia center and Kara Garner, center coordinator, show Joe Kleiber, senior vice president for the National Hemophilia Foundation, the station that helps educate children with hemophilia about how to do their own infusions.
According to Nurse Practitiioner Kara Garner, St. Luke's hemophilia coordinator, hemophilia presents unique psychological, physical and emotional challenges that have never been seen before.
"There is a desperate need for the role of a full time psychologist in the hemophiliac treatment center to address the unique challenges that this population face within the bleeding community," she said.
Hemophilia is a rare genetic bleeding disorder in which the blood doesn't clot normally. If you have hemophilia, you may bleed for a longer time than others after an injury. You also may bleed inside your body (internally), especially in your knees, ankles, and elbows. This bleeding can damage your organs and tissues and may be life threatening.
Physical health concerns are not the only challenges a person with hemophilia face. Psychosocial and emotional issues are prevalent within the bleeding community. These challenges only continue to worsen as a person ages.
If the change in life stage is not adequately addressed, many older adults experience sadness, anger or fear, mood swings, and feeling of abandonment, loneliness and isolation.
Garner says that those with failing health may experience shame and embarrassment due to increasing dependence on others. Family dynamics are often altered during this life phase, requiring each family member to take on new roles.
These changes can often lead to friction in the family dynamics, and if this friction is not addressed properly it can lead to the destruction of the family support system for the person with a bleeding disorder, Garner adds.
"The purpose of this grant is to put into place a program to obtain the best quality treatment and care available for our population within the bleeding community in Idaho, by providing the much needed therapy to assist with the emotional needs throughout various life stages," said Dr. Nick Camillo, medical director of the St. Luke's hemophiliac center.
About the St. Luke's Hemophilia Clinic
St. Luke's Hemophilia Clinic uses its resources to invest in the care and support of our patients, their families, the medical community, education and research, making it possible to invest our time and knowledge as advisers to colleagues, and other medical professionals who treat our patients living with bleeding disorders. Our team continues to educate medical professionals from across the state to increase awareness of signs and symptoms of these disorders, and act as liaisons and advocates for our patients in schools, and in the work place.
About the National Hemophilia Foundation
the National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, NHF is based in New York City with 51 chapters throughout the United States. NHF’s programs, initiatives and events are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC). NHF’s information resource center (HANDI) is available to answer questions, fulfill information requests, provide quality educational publications, and make referrals to additional sources of assistance. HANDI information specialists are available to answer requests from Monday through Friday, 9:00AM to 5:00PM EST, toll-free by dialing 1.800.42.HANDI (1.800.424.2634) or via e-mail at: email@example.com.
Ken Dey served as Public Relations Coordinator at St. Luke's from 2008-2014.