Friday, June 26
“What We Used to Know About ITP and What We Know Now” – James Bussel, MD
In the past, ITP was thought to be a more homogeneous disease in which the pathophysiology was largely antibody based. Therefore it was thought that all of ITP was due to antibodies in platelets and different techniques were available to measure them. As time has gone on, new and important developments have been seen. These include 1) the difficulty in measuring these antibodies in a clinically meaningful way; 2) these antibodies, when present, seem to significantly impair platelet production as well as causing peripheral platelet destruction in the blood; and 3) the recognition that within the heterogeneity in ITP there is heterogeneity of pathophysiology not just in terms of decreased bone marrow platelet production but also the potential role of T cells in this. Another point is that some patients have persistent infections, underlying immune defects, and expanded autoimmunity that can lead to difficulties as well. These and other topics will be covered.
Saturday, June 27
“Pros & Cons of Treatment Options – Steroids, IVIG, IV Anti-D, Splenectomy, Rituxan, TPO-Agonists” - James Bussel, MD; Andra James, MD; Howard Liebman, MD; John Semple, PhD; and Michael Tarantino, MD
The pros and cons of treatment options of ITP are varied and complicated. They are somewhat clear and somewhat in the eye of the beholder. The plan for this session is to debate what they are for several prominent therapies including steroids, IVIg, IV anti-D, rituximab, the thrombopoietic agents, and splenectomy. Some of these therapies (high dose dexamethasone, rituximab and splenectomy) are intended to be curative. Others (prednisone, IVIg, and IV anti-D) have shorter term effects but can often be relied upon to increase the count overnight. All have side effects some of which, e.g., fever and chills, are more annoying than serious. Others may be very serious such as sepsis or potential neurologic sequelae of rituximab.
“Women and ITP” – Andra James, MD
Women who have very low platelet counts prior to becoming pregnant can usually anticipate even lower counts during pregnancy. Women who have not had a splenectomy may want to consider the procedure prior to becoming pregnant. Other experts at this meeting can speak to the pros and cons of splenectomy, but in a woman who responds with a higher platelet count, pregnancy is simplified.
Women who have completed childbearing and are plagued with heavy menstrual bleeding have options that reduce or eliminate menstrual blood loss. Endometrial ablation is a non-invasive outpatient procedure. Although one-third of women who have the procedure for heavy menstrual bleeding ultimately require a hysterectomy, two-thirds to four-fifths of women who undergo the procedure subsequently have normal or reduced menstrual blood flow. Hysterectomy eliminates menstrual bleeding but carries the risks of surgery and requires adequate platelet function and a platelet count of at least 50,000. Planning is required.
“For Teens Only” – Michael Tarantino, MD
Immune Thrombocytopenic Purpura (ITP) may occur at any age. Although it is more likely to occur in children between two and 10 years of age, hundreds of teenagers are diagnosed with ITP each year. It is often said that ITP in teens behaves more like ITP in adults. In other words, teens are more likely than younger children to have a prolonged time with low platelets.
This can be particularly troubling as the disorder itself may profoundly affect the life style of a teen. Bleeding complications or the potential to have bleeding, may restrict physical activity, prevent participation in sports or other extracurricular activities, and lead to some degree of isolation. Young women with ITP may experience heavy menstrual periods that may restrict activity and cause absenteeism from school. Some drug treatments for ITP, such as prednisone or other immune-suppressive medications often cause unwanted side effects. The challenges of ITP particular to teens, those associated with the disorder and its treatment, will be discussed.
“Children and ITP” – James Bussel, MD
Children and ITP will review the evolving developments affecting children with ITP. These include estimates of spontaneous improvement beyond six months from diagnosis, newer insights into the etiology of ITP in children, and limited data involving the use of newer agents in children affected with ITP. There will also be discussion of bleeding and quality of life issues.
“Adults and ITP” – Howard Liebman, MD and John Semple, PhD
Unlike in children, immune thrombocytopenia in the adult is typically chronic in nature. The goal of management is to provide a safe platelet count (>30,000/mcl) with the least toxic treatment. Recent discoveries have supported a careful upfront evaluation to exclude secondary causes of ITP that may lead to a more directed treatment approach. Some newer treatment approaches may offer longer-term remissions with less treatment side-effects.
"Enlighten Program: Sharing Support, Hope, And Awareness Within the ITP Community"
- Sponsored by Baxter
Living with immune thrombocytopenic purpura (ITP) can be challenging. Finding reliable information and support shouldn't have to be. While learning about ITP, you'll also have the opportunity to meet others who share the challenges of living with this rare condition.
“Coping With A Chronic Illness” – Robert H. Phillips, PhD
You’ll learn a lot of valuable information about ITP at this conference. But medical information is only one important component of your life with ITP. How do you cope with it? What are some of the things you can do to improve your life, despite your ITP? In this strategy-packed presentation, Dr. Phillips, a psychologist, author and internationally-recognized expert in helping people cope with medical illnesses, will share a number of techniques that you can begin using immediately. You’ll learn how to work on your physical symptoms as well your emotions. You’ll learn how to improve your interactions and be more confident in yourself. You’ll learn how to be your own best advocate, and how to feel more in control of your own life. This presentation, designed both for individuals with ITP and family members, will strengthen your desire to do everything you can to improve the quality of your life.
"Nplate® (romiplostim) Clinical Overview and Patient Assistance Programs"
- Sponsored by Amgen
In addition to learning about the new ITP treatment Nplate, information about financial assistance options will be presented.
Sunday, June 28
“The Healing Power of Reiki” – Pamir Kiciman, BA, RM, CHt
An overlooked aspect of health is a sense of wellness despite symptoms. Even with an ongoing condition, it's possible to be functional and happy in daily living. Every person has a set of principles, a foundation to live by, which brings meaning and purpose to life. Sometimes this foundation becomes a little shaky. Reiki is a way of living that brings back a sense of peace with oneself and harmony with one's surroundings. It provides wisdom in here-and-now difficulties and is a resource of empowerment in one's responses to challenges. Life is full of questions and many of the answers are available without having to go outside an individual's own scope. Reiki is a teaching that accesses innate wisdom and intelligence, as well as compassion, which propel a vision of one's potential. We will explore how this bedrock is part of the human experience and how it's always accessible, as well as how to keep the access open during challenging times.
“Environmental Health and Illness - How to Use Environmental Medicine
Techniques to Improve Your Health” – Lisa Lavine Nagy, MD
We become ill as a result of our genetics and our environmental exposures. Problem is no one deals with these exposures in an attempt to return us to good health when we become ill. The first step is taking an environmental history. What were you exposed to prior to becoming ill? New formaldehyde-filled office or home, moldy basement, frequent pesticide spraying, high solvent exposure? Not all diseases will have the same exposure triggering them. Autoimmunity may be induced by a variety of environmental exposures.
Some patients may suspect that they had a moldy environment precipitate their illness, others suspect new carpeting, and others may have no idea. We can now measure levels of mold toxins as well as pesticides, heavy metals and chemicals in the body. You must first stop the ongoing exposure, get the substance out of the body and repair damage done to the endocrine system, immune system, and autonomic nervous system and cross your fingers you improve! A detailed description of the Environmental Medicine approach will be explained.
"Living With ITP, Sucess Stories" - Patient Stories
-"How to live with ITP: tips on navigating through life with a bleeding disorder" - Barbara Pruitt
This informative talk is given by ITP patient and PDSA member, Barbara Pruitt. She will share the knowledge she has gained by living with ITP for 47 years. She is proof that there is a way to incorporate ITP and live a full life. She will cover topics as broad as traveling, sports, dining out and safety at home. There is something to be learned by everyone, no matter the severity of your ITP.
- "ITP Can Be a Great Teacher: lessons from my recovery" - Joan Young
Joan Young, PDSA's founder, was diagnosed with ITP in 1992. After 7 failed treatments and living for months with a platelet count hovering near zero, Joan found some interventions she feels prompted her enduring recovery. Her talk will focus on her approach to healing, the internal and external changes she made in her life, and the lessons she learned that continue to help her and others.