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Symposium Builds Awareness about von Willebrand Disease

by Deb Nerud, MA, BS

Medical, psychological and advocacy issues were brought to the forefront in a symposium presented as part of Project Red Flag yesterday. Andra James, MD, MPH, presented a report from the National Heart, Lung, and Blood Institute (NHLBI). The Working Group of NHLBI convened in 2004 and has finished the 4th draft of the guidelines for treatment of VWD.

The document looks at genetics, classification and von Willebrand factor (VWF) protein and its function in VWD. It also includes diagnostic and evaluation tools as well as the signs and symptoms of VWD.

VWD was first described in 1926. Bleeding disorders were previously considered to be only a male disease. “There are 3 kinds of blood cells; white blood cells, red blood cells, and platelets. The VWF attaches platelets to injured blood vessels and without VWF, the “plug” is not stable,” remarked James.

Menorrhagia or heavy menstrual bleeding seems to be one of the hallmarks of VWD. “The management of menorrhagia depends on where a woman is in her life cycle,” stated James. The first line of management is oral contraceptives, pills, patches or vaginal rings to manage the frequency and length of the period. The next best way to manage the disease is using a levonorgestrel IUD, which has been approved by the FDA as a contraceptive, but not as a treatment. Other treatments include progestin only pills or injections.

“D & C’s do not work. Although endometrial ablation may be an option,” concluded James.

Peter A. Kouides, MD added that hysterectomy or intra-nasal DDAVP may also be options for managing VWD. “It is not a cookie cutter approach. Management decision is based on age, child-bearing status, and patient preference.”

Judith Baker, MHSA, spoke on the importance of advocacy in women’s bleeding disorders. The importance of effective advocacy is the provision of better health through increased awareness and knowledge, quicker response to concerns, stronger health care services, and reduced stress on individuals and families.

“Emotional and physical toll of care giving is serious, especially when you delay or ignore your own health needs,” said Baker. The female response to stress is described as to ‘tend and befriend’ rather than the familiar ‘fight or flight’ response which seems to be more typical of males.

Social support improves health by helping to regulate stress systems. Females who bond with other females are better able to fend off threats and are less rattled by stressful events.

James provided tips for caregivers from the Family Caregiver Alliance including: learning about the illness of the loved one, seeking help from others, maintaining friendships, finding a support group, getting help from community agencies, and appreciating the good moments.

The symposium ended with Heather Huszti, PhD speaking to the psychological issues for women with bleeding disorders. Potential issues included: uncertainty as some women go undiagnosed for as long as 16 years, isolation, reproductive issues, self-esteem, pain, and school issues.

In coping with these concerns, Huszti suggested individual counseling, support groups, specific behavioral medicine techniques tailored to the individual, pharmacologic interventions, and education. There are many more educational materials and sources for women available today than in the past.