Topics included in the 2009 Inhibitor Education Summit Webcasts and DVD
During the 2009 Inhibitor Education Summits a large number of the general and breakout sessions were captured to help provide patients with hemophilia with inhibitors and their caregivers, who were unable to attend and participate in the Summits. Participants of this activity will receive valuable information on educational topics that can affect their management strategies for improving daily life.
The above videos contain highlights from both our Summit Overview and Youth Camp Daycare. They can be viewed without signing in.
Kickoff greeting
Patrick Torrey
Total running time: 53:43 minutes
Caregivers of persons with hemophilia with inhibitors face a multitude of day-to-day challenges. These include recognizing bleeding episodes, maintaining and administering factor, and coordinating doctor visits, all while trying to maintain a normal lifestyle for themselves and persons with hemophilia with inhibitors. Also, the psychological burden of caring for a person with hemophilia with inhibitors can be significant, as the pain associated with bleeding episodes and joint disease is shared by both patient and caregiver alike. This session is designed to openly address the most common concerns of caregivers, how best to deal those concerns, and what resources are available to help. Also, the importance of caregiving with a support system and identifying resources for support in the local community will be addressed.
New Trials, Future Treatments, and Genetics
Steven Pipe, MD
Total running time: 49:00 minutes
Hemophilia research performed during the last 20 years has resulted in significant advances in both the understanding of disease and the care of persons with hemophilia with inhibitors. Even with these advances, certain challenges remain, including reducing the incidence and/or the development of inhibitors in persons with hemophilia. Recent studies examining persons with hemophilia are uncovering certain genetic traits that increase the likelihood of developing inhibitors. This session will examine new research and current trials that are advancing the knowledge of the development, care, and elimination of inhibitors in persons with hemophilia.
Insurance and Financial Considerations and Legislative Advocacy
Val Bias and Sally B. McCarty
Total running time: 1:22:19 minutes
The costs associated with treating a person with hemophilia with inhibitors are often high, and the impact of these costs depends on both the treatment used and the type of insurance coverage. This session will explore these financial challenges and provide resources and tips on how to navigate the complexities of financial management of this disease. Also, national organizations such as the National Federation of Hemophilia and the Hemophilia Foundation of America have been advocating for the needs and interests of people with hemophilia for almost 60 years. This has resulted in millions of dollars of government funds being devoted to improved medical care, services, and education, as well as safety and surveillance of blood and blood products. This session will help participants understand how getting involved in patient advocacy groups results in raised awareness of bleeding disorders, protection of individuals from discrimination, and can ensure that persons with hemophilia with inhibitors receive full access to high-quality care.
PAIN: Living Through It, Living Around It
Raffi Tachdjian, MD, MPH
Total running time: 37:50 minutes
Managing pain can be challenging in patients with severe hemophilia. Acute bleeding in joints and soft tissues can be painful and require some type of pain relief. Because persons with hemophilia must avoid taking common pain relievers such as aspirin and NSAIDs (such as ibuprofen and naproxen) during bleeding episodes, they must sometimes resort to using alternative approaches to help alleviate pain. This session will focus on factors affecting pain perception and expression, behavioral strategies to managing pain for both people with hemophilia with inhibitors and their families, and alternative strategies to help alleviate pain such as acupuncture, yoga, and massage therapy.
Identification and Early Treatment of Bleeds: What to Look For
Prasad Mathew, MD, and Audrey Taylor, MSN, FNP-BC
Total running time: 46:00 minutes
The presence of inhibitors can increase the risk of uncontrolled bleeding and make the treatment of bleeding episodes in people with hemophilia difficult, despite on-demand treatment with bypassing agents. This session will discuss how to identify bleeding episodes, and the best methods of treatment to stop bleeds. Also, the use of prophylactic treatment can be effective and safe in reducing the incidence of joint bleeding and subsequent joint damage. This session will explore the risks and benefits of prophylaxis in severely affected persons with hemophilia and its potential impact on quality of life.
Nutrition: Discovering Your Food Pyramid
Helen Tayag, LDN
Total running time: 45:30 minutes
According to the Centers for Disease Control, children and adolescents with hemophilia are almost twice as likely to be overweight as the general population, which is also experiencing an obesity epidemic. Choosing a healthy diet can result in improved physical health and an enhanced sense of well-being in people with hemophilia with inhibitors. While no special diet is recommended for persons with hemophilia, the basics of healthy eating still apply. The use of a Food Pyramid, a visualization of the five basic food groups, is an excellent reference tool to ensure proper nutrition on a daily basis for a healthy, balanced diet. This session will discuss how to find a proper diet that people with hemophilia can easily incorporate into their daily lives, resulting in better health and improved quality-of-life.
Dr. Bill's Perfect Pill: Exercise
William R. Klinger, PhD, CTRS
Total running time: 58:00 minutes
Exercise is an extremely important component of the management of hemophilia. Exercise results not only in positive physical benefits, but also in psychological benefits such as improved confidence, reduction of anxiety, and enhanced feelings of well being, all of which enrich the quality of life in individuals with hemophilia with inhibitors. Exercise can also result in less frequent joint bleeding, increased participation in normal physical activities associated with daily life, and increased social participation and autonomy. This session will discuss the numerous benefits of exercise, and also identify which sports and activities are recommended for participation by persons with hemophilia with inhibitors.
Can I Have Surgery? An Overview of Orthopedic Surgical Options
Angela Forsyth, PT, DPT
Total running time: 46:00 minutes
Elective orthopedic surgery may be an option for improving range of motion in a joint that has been affected by many years of repeated joint bleeds and arthritis. However, for many people with hemophilia with inhibitors, concerns about bleeding complications during surgery or afterwards may prevent them from seeking orthopedic surgery that may bring them relief from their symptoms. This session will explore the different surgical procedures that are available to help improve joint range of motion and mobility in people with hemophilia with inhibitors, and discuss who may be eligible for such surgery.
What's New With ITI and a Joint Effort: An Overview of Helpful Braces, Splints, Gizmos, and Gadgets
Guy Young, MD
Total running time: 42:20 minutes
Angela Forsyth, PT, DPT
Total running time: 41:08 minutes
This session will encompass multiple aspects of immune tolerance induction (ITI) for removing Factor VIII and Factor IX inhibitors. Included will be discussions regarding the risks and benefits of an ITI program, the kinds of persons with hemophilia with inhibitors who are eligible to receive ITI, the different treatment methods that could be used, dosing administration, products used, and the commitment required on the part of the patient and their families. This session will also focus on the effect of bleeding in the joints over time and practical tips to help manage joint disease in children and adults living with hemophilia with inhibitors. In addition, the use of orthoses (splints and braces) is an important part of the rehabilitation of people with hemophilia with inhibitors and can help reduce the impact of disabling and/or handicapping conditions. The use of these and other orthotic devices will be discussed in this session.
Panel Discussion
Moderator: Edward Kuebler, LCSW
Total running time: 43:00 minutes
Faculty: Joseph Caronna; Charles P. Gilbert II, ACSW; Erin Stang, LCSW; and Patrick Torrey
This session will visit the psychosocial aspect of living with hemophilia with inhibitors.