ITP Conference 2005

Program

You can see the PowerPoint slides from our program. Some files are very large so they may take awhile to view.

"ITP-An overview"

Dr. Buchanan, Dr. DeLoughery and Joan Young present some highlights of the disease, the diagnosis and what you can expect.

• Dr. Buchanan's Overview (coming soon)
• Dr. DeLoughery's Overview (see his main talk below)
• Joan Young's Overview

 

"Treating ITP: what you can expect"

Thomas DeLoughery, MD

One of the daunting aspects of ITP is the number of different therapies that are recommended ranging from observation to bone marrow transplant. Dr Deloughery will discuss the most common therapies concentrating on their effectiveness and side effects. He will also discuss his approach for matching a particular therapy for a particular patient.

Dr. DeLoughery's Presentation

 

“The Immune Mechanisms Responsible for Immune Thrombocytopenic Purpura”

John Semple, PhD

AutoImmune Thrombocytopenic Purpura (AITP) is a bleeding disorder in which autoantibodies are directed against an individual’s own platelets, leading to their enhanced destruction by leukocytes called macrophages in the spleen. The cause of this disease is unknown and most research in AITP has concentrated on the characterization of the antiplatelet autoantibodies produced by lymphocytes termed B cells. However, in the last 10 years, a relatively explosive body of research has suggested that a second type of lymphocyte called a T cell is abnormal in patients with AITP and may be responsible for stimulating the production of the anti-platelet autoantibodies.

Currently, it has been confirmed that not only do abnormal T cells exist in patients with AITP, but that these T cells actually direct B cells to differentiate and secrete the IgG anti-platelet autoantibodies. In addition, new exciting research has recently suggested a second type of immune platelet destruction in AITP is mediated by a type of T cell termed a cytolytic T cell (CTL). This lecture will update our understanding of the cell-mediated immunology of AITP and give new insights on the mechanisms of action of IVIG and anti-D therapy in the disorder.

Dr. Semple's Presentation

 

“Autoimmune diseases and yeast, allergies, infections, and antibiotics…what you can do about it”

Edward Conley, DO

Dr Edward Conley is an Assistant Clinical Professor of Medicine at Michigan State University, the best-selling author of “America Exhausted: Breakthrough Treatments of Fatigue and Fibromyalgia” and “Safe Estrogen: 20 Secrets to Reducing Your Breast Cancer Risk” and the host of 2 national PBS health specials. He has been the director of the Preventive Medicine Center of Michigan and the Fatigue and Fibromyalgia Clinic of Michigan since 1987.

Dr Conley will discuss how allergies, infections (viral, bacterial, parasitic, and fungal), and nutritional deficiencies can be an underlying or exacerbating factor in platelet disorders. Through his work with nearly 20,000 people with immune dysfunction, autoimmunity, and fatigue Dr. Conley became frustrated with treating symptoms and never being able to treat the cause of autoimmunity. He started to evaluate the immune challenges that occurred in the lives of people with autoimmunity and once found, worked to correct those underlying imbalances. He will discuss how allergies and infections upregulate the immune system thus causing that immune system to attack the person it was meant to protect. All persons with autoimmune disease must do everything in his/her power to reduce immune activation, which reduces inflammation and lowers the destruction of platelets and other clotting factors. He will explain cutting edge methods of evaluating for underlying factors that trigger immune activation and discuss in detail how to eliminate those factors from your life. His common sense approach to immune dysfunction is based in cutting edge science, yet placed in easy to understand language. This is a unique view of autoimmune disease and offers hope of correcting the underlying problems that trigger immune activation. This is a must for anyone with platelet disorders related to autoimmunity.

Dr. Conley's Presentation

 

“ITP in Children”

George Buchanan, MD

diopathic Thrombocytopenic Purpura (ITP) during childhood has a fairly typical clinical presentation, characterized by sudden onset of bruises, petechiae, and mucosal bleeding in an otherwise well child. The diagnosis of ITP is usually straightforward. What is less clear, however, is how children (as well as adults) with ITP should be managed. It is accepted that the majority of children with ITP recover within six months irrespective of initial treatment. Persons with documented thrombocytopenia for greater than six months are designated as having chronic ITP.

Unfortunately, many physicians lack experience with ITP and therefore are frightened by the prominent clinical features and markedly low platelet count. This sometimes results in inappropriate management. Pediatric hematologists are involved in the treatment of most children with ITP in the United States. There is much diversity of opinion among them regarding whether they should be “interventionists” (offering drug treatment to most if not all ITP patients) or “non-interventionists” (recommending drug treatment only for those children who are having active bleeding). Most interventionist physicians focus on the platelet count as the primary outcome in childhood ITP. However, for a number of reasons other outcome measures are more important. These include bleeding manifestations, cost and side effects of treatment, and quality of life of the child and family. Each of the drug treatments used in ITP has a number of side effects, many of them not well characterized or quantified. There is no evidence yet that drug treatment of any kind will prevent intracranial hemorrhage, the most dreaded complication of the disease, or other serious complications. It is possible that the treatment for ITP is often worse than ITP itself. An observational “wait and see” strategy has been highly successful in most children with ITP.

The 20-25% of children with chronic ITP are managed in a similar fashion as those with the acute disease. There is little evidence that drug treatment has longlasting beneficial affects. Splenectomy is the only proven curative therapy.

There is clearly need for additional research in ITP to provide more scientific evidence for its management. In the meantime, persons with ITP and their families need to be well informed and to strongly advocate for research funding and for education of primary and specialist physicians.

Dr. Buchanan's Presentation

 

“Understanding ITP Research”

Patrick Fogarty, MD

Research on ITP is designed to answer scientific questions using laboratory experiments (basic science research) or clinical questions related to patients (clinical research). Clinical research studies in ITP can address diagnosis, clinical features, prognosis, treatments, or other issues. In this talk we’ll take a look at the different types of research with relevant examples from the ITP literature, and also discuss how you can get involved.

Dr. Fogarty's Presentation

 

“Managing Your ITP at Home with IVIG”

Marilyn Hanchett, RN, PhD

Immunoglobulin (IVIG) therapy is an important treatment in the management of platelet disorders. This presentation will discuss the use of IVIG in ITP, viral safety of products, management of potential side effects, recent IVIG manufacturer changes, and the availability of specific brands. Rho (D) immune globulin in ITP will be included in the review of products currently approved by the FDA.

This session will also explore location of care issues related to IVIG treatment. IVIG may be administered in the hospital, outpatient clinic, physician office or at home. However most individuals who require on going infusions prefer to receive treatment at home. Is treatment at home safe? Who will administer the IVIG infusion? What can I do to reduce the possibility of side effects? Will my insurance cover treatment at home? These and other frequently asked questions will be addressed.

Dr. Hanchett's Presentation

 

“Healing Cuisine”

Meredith McCarty

Today eating well means eating a plant-based whole foods diet, one that includes the foods that are attracting international attention for both the prevention and recovery from disease. Healing cuisines are the traditional culinary practices of the longest-lived cultures on the planet. Modern macrobiotic dietary recommendations integrate the present with the past by focusing on the foods that have always supplied humanity with the greatest nutritional support, prepared in ways that fit American lifestyles today.

In addition to a show and tell of healing foods and how to use them, Meredith reviews the latest supportive scientific information from groups such as Physicians Committee for Responsible Medicine and MDs such as Andrew Weil and John McDougall. A comparison of the 2005 USDA Food Pyramid with the cutting-edge Healing Foods Pyramid from the University of Michigan's Integrative Medicine Dept. reviews America's progress toward more informed and healthy food choices in order to stem the tide of disease that has swept our nation.

(PowerPoint was not used)

 

“Coping with ITP”

Joan Young

Joan draws from her own experience with ITP, the “Survey of Non-Traditional Treatments in ITP”, and communication with hundreds of ITP patients to highlight some things that may make it easier to cope with the disease. She presents a holistic approach to wellness addressing improved physical health through diet changes, the benefits of positive thinking, the emotional rewards of being true to yourself, and the spiritual role of compassion in healing.

Joan Young's Presentation

 

Patient Panel

(last names omitted to protect privacy)

Shari

I was diagnosed with ITP Feb. 27, 2004, at the age of 40. When I was diagnosed I had a platelet count of 12,000, but it quickly dropped to 1,000. My doctor prescribed a high dose of prednisone. This contributed to a seizure, terrible headaches, and low potassium levels. Then I had IVIg which didn’t work very well for me. Next I had a splenectomy. My platelets rose to more than 200,000. However a few weeks after surgery my platelet count dropped to 4,000. My doctor suggested Rituxan. After that treatment my platelet count gradually increased to 400,000. My platelet count has remained at that level for more than a year.

Caroline

I was diagnosed and hospitalized with ITP in April of 2000 with a platelet count of 2,000. However, I had not felt good the three years prior to diagnosis suffering from extreme fatigue, vertigo, joint pain and other vague symptoms.

I was put on 60 mg. of Prednisone and stayed on that dosage for six months. During that time my platelets never got above 50,000. I started treatments with a doctor who specialized in acupuncture and Chinese herbs. I had my first round of IVIG and within six weeks platelets were in the normal range. I started to reduce the Chinese herbs and my count came crashing down to 7,000. I had another round of IVIG, increased the herbs and slowly my platelets went up again and stayed in the 200,000 range for 15 months.

Then in April of 2002, my platelets came crashing down to below 10,000 once again. I tried the Chinese herbs but could not get a safe count. After four rounds of IVIG, I gave in to the pressure and had a splenectomy. Immediately after surgery my platelets were 150,000; one week later they were 7,000. I tried Danazol, which gave me a severe allergic reaction and landed in the hospital with another round of IVIG. My doctor asked me to consider Prednisone again at a dose of 40 mg. a day. I compromised and started on 20 mg. a day, and got a higher platelet count than when I was on the 60 mg. I eventually got it down to taking 10 mg. and tapering off. I cycled this dose every two weeks for a year with a platelet range from 5,000-80,000.

In July of 2004, I went to see Dr. Edward Conley. He said he felt that I had mold allergies and yeast overgrowth. He put me on a yeast-free, mold-free diet and supplements. He also discovered that I was so deficient in Folic Acid that it was like I was malnourished. Within eight weeks of starting Dr. Conley’s program my platelets were over 100,000. Four months later, my platelet count was 594,000. They have now settled into the 400,000 range and I have been drug free for almost a year with most of my original symptoms all but gone.

Valerie (Hannah’s mother)

Hannah was diagnosed with ITP at a healthy baby exam at 16 months old. She had severe bruising all over her body, previous unexplained bloody nose a month before diagnosis and blood in her stool at the doctor’s appointment. At our first appointment with a pediatric hematologist, they ran a multitude of tests to rule out many other things. She tested positive for the anti-platelet anti-body and negative for many other things, and she was fully diagnosed at that time with ITP. She was given injections of Interferon-A for a year, then went on prednisone. These helped her, but had severe side effects.

Hannah had a WONDERFUL reaction to Win Rho. Her platelet’s shot UP. After her third infusion she contracted double viral pneumonia. During the eight day hospital stay, to everyone’s amazement, her counts went from 32,000 to the highest ever for her, 325,000 on the day she came home. Since then, her body seemed to react differently to viruses and infections, they would raise her counts instead of lowering them like they did prior to this severe bout of pneumonia.

Hannah is now nine. She has maintained platelet counts of 50,000 – 150,000 since her last infusion of Win Rho 3 years ago. She has had no medical intervention for her ITP since then. The doctors and I agree that her ITP has “stabilized” well. It is not gone, but it is not having severe effects on our lives as it did the first 3 years. She is a very active child and enjoys life to the fullest!

Tim and Mandy

Our son was diagnosed with ITP last July 12, about a 1 1/2 months after his 3rd birthday. He was displaying an unusual number of bumps on his head and spots and bruises on his body. His pediatrician immediately ordered him to have a blood test, and after she told us the platelet count was 13,000, we took him to the hospital. He responded well to IVIG, but his count kept falling until 5 weeks later he had a nosebleed that his babysitter had difficulty stopping. That night he reentered the hospital with a count of 11,000. Since then he's had a regular pattern of needing intervention about every 5 weeks. He received IVIG every time except for WinRho one time. In January we changed pediatric hematologists after the prior one insisted on treating him with prednisone. After his last treatment in April, we had him tested (by blood sample) for h pylori, after seeing the mention in the PDSA newsletter. He tested positive, and we gave him the medications to treat it. His count yesterday was 96,000, which at 5 weeks is a marked improvement over the previous cycles. We are hoping and praying that this is the beginning of the end of his ITP condition.