Woman to Woman Peer Outreach Program

1. Woman to Woman Peer Outreach Program 2010 - 2011

2. Welcome and Introductions • Facilitators • Participants Training Overview – Logistics • Sign-in • Training Schedule

3. Program Goal • To reduce the incidence of undiagnosed • bleeding disorders among women Program Objectives • To increase knowledge of women's blood disorders • To identify undiagnosed women who have signs of a blood disorder • To provide women with resources regarding bleeding disorder information, diagnosis, and treatment 

4. Training Objectives • Distinguish between signs of a heavy period and symptoms of a bleeding disorder • Identify national and local resources for women who have a bleeding disorder • Identify at least 3 potential places to offer a presentation about women’s bleeding disorders • Demonstrate effective communication skills for small group presentations • Express a personal level of self-efficacy in being able to present information about women’s bleeding disorders to small groups • Reflect upon and integrate personal experiences with concepts from the training

5. Ground Rules • Confidentiality (sign agreement) • Only one person speaking at a time • Listen to others with a respectful ear • Provide constructive feedback in a sensitive manner

6. NHF and Chapter overview • National Hemophilia Foundation • NHF is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.

7. NHF Primary Activities • Funds research to advance science and find a cure • Advocates for public policy changes • Provides education and support programs for families (First Step), young adults (National Youth Leadership Institute) and women with bleeding disorders (Victory for Women, formerly Project Red Flag). • HANDI, NHF’s free resource center Phone 800.424.2634 e-mail: handi@hemophilia.org • Web sites for more information: www.hemophilia.org www.hemaware.org

8. Chapter information: <insert your chapter’s information here>

9. Pre-test assessment • Please fill out to the best of your ability! Volunteer Introductions • Activity: Why are you here? • Why is being part of this project important to you? • What would you like to share about yourself with the group?

10. Volunteer Introductions (cont’d) • Icebreaker: Two Truths and a Lie

11. Medical Information

12. Video: Healthy Mind, Healthy Body • Debrief • Did you learn something new? • Did you relate to the stories about the two women? • Did you like the way their stories were told? Do you think anything important was missing? • Do you think any information was missing that will be important to the women you will be presenting to? • What medical questions do you still have?

13. Prevalence of vWD in our state (fill in with your state’s information) • It is believed that 1% of the general population in the United States has von Willebrand disease. • This means in our state _______ women potentially have von Willebrand disease (need to obtain the number of women residents in your state) • Of these, only ____ are being seen at treatment centers around the state.

14. Other bleeding disorders in women • Platelet function defect • Hemophilia (often as carriers)

15. Potential physical consequences of an untreated bleeding disorder: • Excessive bleeding and pain that limit physical activities and reduce quality of life • Unnecessary surgeries, particularly hysterectomies. • Problems during the birthing process

16. Potential psychological consequences of an untreated bleeding disorder: • Loss of dignity and control • Inhibited sexual contact • Isolation

17. Normal blood clotting mechanism versus a bleeding disorder • A bleeding disorder is a flaw in the body’s blood clotting system. • von Willebrand factor, like factor VIII and IX (called Hemophilia A and B respectively) are proteins in the blood. • Blood clotting (also known as coagulation) is the process that controls bleeding by changing blood from a liquid to solid state. • When there is a defect or deficiency in a clotting factor or platelet, the clot is incomplete and bleeding continues • Someone affected by von Willebrand disease or a platelet function defect does not have the ability to form the platelet plug. Someone affected by hemophilia does not have the ability to form fibrin.

18. Normal Clotting • Bleeding starts • Vessels constrict • Platelet plug • Fibrin clot Abnormal Clotting • Bleeding starts • Vessels constrict • Incomplete platelet plug, continued bleeding • Incomplete and/or delayed formation of fibrin clot • Continued bleeding.

20. Genetics • A hereditary disease is one that can be passed down through families or inherited. • Inherited bleeding disorders are caused by defects in the genes (units of inherited information) that make the clotting factors needed for bloodclotting. • The abnormal gene in von Willebrand disease is on one of the regular chromosomes, not on one of the sex chromosomes, like hemophilia. Therefore, unlike hemophilia, which usually affects males, von Willebrand disease affects males and females in equal numbers.

21. Genetics (cont’d) • These genes, like all genes contained in cells, are passed from parents to their children. Just as a parent may pass a physical trait such as a button nose to a child, a parent may pass the gene that results in a bleeding disorder. • von Willebrand disease is a dominant trait. A parent who has von Willebrand disease has a 50% chance of passing it on to their children. • A bleeding disorder can also be the result of a new or spontaneous mutation (change in the gene).

23. Signs and symptoms of bleeding disorders in women A woman may have a bleeding disorder if she has one or more of the following symptoms: • Heavy menstrual periods • Bleeding for more than 7 days, from the time it began until it stopped • Flooding or gushing of blood, limiting daily activities such as housework, exercise or social activities • Passing clots that are bigger than a quarter • Changing tampon and/or pad every 2 hours or less on heaviest day

24. Signs and symptoms of bleeding disorders in women (cont’d) • “Low in iron” or has been treated for anemia • Has bleeding symptoms and someone in her family has a bleeding disorder – vWD, or a clotting factor deficiency, such as hemophilia • Has past experience with heavy bleeding from dental surgery, other surgery, or childbirth and/or has other additional bleeding symptoms such as: • Frequent prolonged nose bleeds (longer than 10 minutes) or • Prolonged bleeding from cuts (longer than 5 minutes) or • Easy bruising (weekly, raised and larger than a quarter) (MASAC sub-committee recommendations, June, 2010)

25. Types of bleeding disorders in women • von Willebrand Disease • Not everyone who has von Willebrand disease is symptomatic. • Gastrointestinal or urinary tract bleeding may also occur. • Many people with von Willebrand disease may bleed heavily or for a longer time after surgery or injury. • Sometimes bleeding is caused by trauma and at other times there is no known cause.

26. von Willebrand disease (cont’d) • Incidence • Affects up to 1% of the population, both males and females • Over 1.5 million girls and women in the United States may have a bleeding disorder. • Currently, there are fewer than 10,000 girls and women diagnosed with a bleeding disorder in the Unites States. • One in four females with anemia may have an undiagnosed bleeding disorder.

27. Carriers of Hemophilia • General • Female carriers of the hemophilia gene may have bleeding symptoms. • Carriers who exhibit symptoms are known as “symptomatic carriers”. • Carriers may suffer excessive menstrual bleeding, bruising, nosebleeds, and bleeding following surgery, dental work or childbirth. • Some carriers may also have joint and/or muscle bleeds. • Incidence • Over 30% of carriers have below normal factor levels. • 25-30% of carriers report abnormal bleeding.

28. Platelet Function Defect • A defect in the platelets necessary for blood clotting is known as “Platelet function defect”. • The symptoms associated with platelet function defects are very similar to those associated with von Willebrand disease.

29. Diagnosis of bleeding disorders If someone thinks they might have a bleeding disorder they should: • Talk to their primary care physician about their concerns. • The physician can then rule out other disorders/diseases. • Seek a referral to a local hematologist associated with the local treatment center network.  The following are the steps taken to diagnose a bleeding disorder: • Personal History • Family History • Physical Examination • Specialized laboratory testing • Expert interpretation by a hematologist specializing in coagulation disorders

30. Treatment of Bleeding Disorders The Influence of Diagnosis on Treatment • There are a variety of treatments for bleeding disorders based on the type of bleeding disorder and the patient. • A von Willebrand disease Type 1 diagnosis indicates an individual has a decreased amount of von Willebrand factor, but the von Willebrand factor function is normal. • A von Willebrand disease Type 2 diagnosis indicates an individual ha • abnormal von Willebrand factor. Individuals with a Type 2 diagnosis may also have a decreased amount of factor. • A von Willebrand disease Type 3 diagnosis indicates an individual has total or near total absence of von Willebrand factor. • It’s important to note that individuals may have severe bleeding symptoms no matter what type of von Willebrand disease affects them.

31. Treatment options • Hormones • Localized treatments • DDAVP • Factor VII concentrate

32. Telling Your Story: Presentation skills

33. Activity • Sharing your life story: life narrative • Why did you choose this item? • What special memory does it elicit for you? • What is the significance given the topic?

34. Activity (cont’d) • Debrief: • What commonalities were there in the stories? • What differences? • How does this activity relate to this training?

35. Tips for Effective Presentations and Managing Fear

36. Information in this section is excerpted from the following sources: Anne Thomas, An Indispensable Public Speaking Skill - Creative Storytelling, 2010, and Dianna Podmoroff, Managing Presentation Nerves, 2010 Storytelling is key! • Selecting the right story for your presentation • Developing your story • Bring your story to life • Practice your story until it becomes second nature • Know when to stop

37. Keep these suggestions in mind: • Be authentic • Pay attention to your audience • Practice • Create an experience

38. Public speaking and fear • Practice deep breathing • Drink water • Smile • Use visualization techniques • Just before you start talking, pause make eye contact, and smile • Speak more slowly than you would in a conversation • Move around during your presentation • STAY or Stop Thinking About your Yourself

39. Setting personal boundaries • Setting boundaries in the following areas may be helpful • Time • Emotions • Personal information

40. Personal boundaries (cont’d) • Tips on maintaining personal boundaries • Do not give out home phone numbers or an address. • Do not attempt to answer medical questions. Always refer the woman to her primary care physician or the chapter for a referral to a local treatment center. • Do not counsel women in the audience • Listening to an individual’s story without handling the problem • Refer a woman who suspects she has a bleeding disorder to the local treatment center or chapter • If you don’t know the answer, refer to your chapter or HTC

41. Conducting the Presentation

42. Steps for presentation • Sign-in • Welcome and introduction • Who you are • Why you are speaking • Confidentiality

43. Steps for presentation (cont’d) • Welcome and introduction (cont’d) • Housekeeping issues • Presentation length • Time for questions • Respect for each other’s perspective • Outline of presentation (agenda) • Prevalence of vWD in your state

44. Steps for presentation (cont’d) • Why is this information important to you? • Referral issues • Questions • Distribute handouts/giveaways • Closing

45. Networking skills • Personal contacts • Community contacts • Making the initial contact Materials needed Community resources

46. Putting It All Together: Presentation Practice

47. Providing feedback • Guidelines for feedback • Positive feedback • Constructive criticism • Practice activities • Debrief

48. Wrap-up

49. Summary and final questions • Next steps • Post-test assessment

50. Follow-up Session • Logistics and purpose • Debriefing the presentations • Celebrating successes • Problem solving challenges • Next steps • Future presentations and chapter involvement • On-going support