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J.H. Johnson

J.H. Johnson

Hetlena is devoted to helping others face the trials of life with an open mind and energy. A cheerleader for handling life’s challenges with laughter and spirited resilience, she believes in living your best life while living with lupus.

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Edith Williams, Ph.D., M.S.

Dr. Williams has brought about many developments in research on living with lupus. She has brought to the forefront the need for lupus research to take a more sensitive look at the data collected and analyze it not only with methodical numbers but with heart. By examining not only the culture, genes, and medical data lupus presents, but by also paying close attention to the environmental evidence, Dr. Williams brings lupus research full circle in the lives of those living with this disease.

Dr. Edith Williams has been involved in several research studies of lupus and other autoimmune diseases, but nothing compares to the impact she has made with her work in them all. Her investigation into uncovering common causes of lupus in the Buffalo, New York based lupus project was based on patients’ surroundings. This played a significant role in site-clean up and legislation to support lead screening. In keeping with the epidemiology of real life, Dr. Williams continues to implement research that directly describes to the important gains for those most affected by prevailing health disparities. She has worked to develop an independent research program focusing on minority women’s health within the Institute for Partnerships to Eliminate Health Disparities (IPEHD). Dr. Williams is currently leading a federally funded community-based research project that empowers African-American women successfully living with lupus to mentor and support those who are newly diagnosed with lupus.

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$15 eBook Edition

For those digital readers, receive an eBook Edition of "Lupus, The New Black Cancer." You'll also receive access to the Live, Love, Laugh, It's Only Lupus Facebook community.

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$20 Supporting Lupus Awareness

This bonus supports the writing of this book for lupus awareness. Each book will be signed by the authors. Thank you in advance.

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$25 Patient Support Pledge

This bonus supports the writing of this book because you believe patients deserve a voice. Each copy will include a personal thank you note, picture and be signed by the authors. If you know this disease, then you know the importance of this book. Thank you in advance.

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$50 I Know Lupus

Because you know lupus and you support research to find a cure for this disease, this bonus will include a thank you note, picture and be signed copy by the authors. Supporters on this bonus level will receive a free t-shirt stating support of lupus awareness and research.

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$100 Made for Medical

The medical research and education community makes it all happen! This thank you bonus will include two signed copies of the book, a 30 minute phone conference or webinar with the authors to answer any questions or curiosities about the book. Invite anyone you know to the call!

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Lupus, The New Black Cancer

Has a New Cancer Been Discovered?

Could lupus be a new cancer? Even more scary, could lupus be a new 'black' cancer? The word cancer itself brings fear into the minds of anyone who hears it. Yet, lupus, a perplexing autoimmune disease that ravishes the body in so many ways similar to cancer, may be considered to be a new cancer that mostly affects minorities.

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Columbia, South Carolina
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Synopsis

Why is this a concern? Well medicines cost money. And money, respectfully, is not economically cooperative in our world today. I should know, I am black, and I have lupus. I was blessed. One of the lucky ones to be able to take advantage of trying one of the first and only new drug to be approved for the treatment of lupus in over 50 years. This drug, Benlysta is delivered intravenously. It is classified as a type of chemotherapy by drug companies. Injections can be twice a month and then moved to once a month. It costs. It costs a lot. One treatment of Benlysta was charged at $6,400. That’s without insurance. Luckily, I had insurance during the time of my treatment. My co-pay was a blessing. That’s once a month, about a day or two missing of work – if I felt well, and then I move on. I tried it for almost two years. Didn’t make difference. I’m still in pain.

What makes it more than just another disease? Well, Lupus affects us all. My probability of developing cancer is the same as the probability of anyone in here developing lupus. Many people are not able to work and those dying from the disease are not being accounted for because lupus is not always prioritized as a cause of death. I hear the comments about lupus being considered a "black disease." I'd like to explore this on a deeper level.

Outline

Introduction
Is it Lupus - Introduction to lupus, society, disparity concerns, and tests.
Catching Lupus - Understanding how lupus research is catching on in the industry and why.
Making It More - If you know it, then you know ...
My Story - Lupus is dear to me because it is in me. But what makes it so special to me. I am no different from all of the others suffering with this complex disease. Yet, medical research proves that no two lupus patients are alike.
Comparative Cancer - Relating lupus to Cancer in a thorough outline.
Black Lupus - Exploring more details as it relates to Cancer and Lupus.
All In - Everyone here could have lupus. Is this so?

Audience

Reportedly, approximately 1.5 to 2 million Americans have been diagnosed with lupus. And almost 5 to 6 million worldwide, making it a rampant medical problem.
Star power has boosted attention to the lupus community. For example the publicly released statement of Selena Gomez brought more that 350,000 hits to the lupus.org website in less than a few hours.
90% of those diagnosed with lupus are women. I’m a woman. And 2 out of 3 of those are African American women along with Hispanic, Asian or Native American.
National Institute of Health (NIH) has reinitiated more than up to $140 million dollars into autoimmune research that includes lupus.
The Centers for Disease Control (CDC) has approved almost $2 million dollars to help researchers encourage more minority participation in clinical trials.
Medical Community
Lupus patients and their families
International Medical Researchers
Healthcare workers

Author

Hetlena Johnson is a highly recognized author, speaker, and trainer devoted to helping others face the trials of life with an open mind and energy. A cheerleader for handling life’s challenges with laughter and spirited resilience, Hetlena knows all to well how difficult life challenges can be. She has delivered many keynote addresses and conference presentations on living your best life while living with lupus. She has been living and thriving with lupus for 23 years.

Promotion

Currently I have an active presence in the health and personal blog stratosphere. Both authors are sought after public speakers and advocates towards lupus awareness. Additional Marketing will be done via social media channels, public community organizations, college textbook and development offices, medical community, healthcare sectors, and national organizations to include conferences.
1. Community roundtables will be held on selective chapters of the book to increase awareness and allow for more stable research to be conducted on societal views.
2. University and other college support will be initiated through interviews with medical researchers that have influences on lupus research and clinical trials.
3. Various conferences will be attended to derive attention.
4.Personal interviews and stories will be conducted.
5.Television interviews and exposure to national platforms, including the new public health agenda on lupus.

Competition

The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families (A Johns Hopkins Press Health Book) 1st Edition
by Donald E. Thomas Jr. MD FACP FACR (Author)
Systemic lupus erythematosus is an autoimmune disease that can affect any system and organ in the body. For the 1.4 million people in the United States who have lupus, an overactive immune system senses that different parts of the body do not belong, and it attacks these parts. The immune system may strike the cells that line the joints or tendons, for example, causing pain and swelling. An incredibly complex disease, lupus must be properly treated for the optimal health and well-being of the person who has it.

Lupus, The New Black Cancer approaches the disease from a medical researched based treatments and comparative looks at other diseases and cancer. Being more current, this book will include a more intense look at those who are really affected by the disease --research based communities.

The First Year--Lupus: An Essential Guide for the Newly Diagnosed Paperback – October 2, 2003
by Nancy C. Hanger (Author), M.D. Andrea Schneebaum M.D. (Foreword)
Lupus affects an estimated 1.5 million people in the U.S.—90 percent of whom are women—but due to the diversity of its symptoms and severity, it remains one of the most difficult conditions to identify and diagnose. In the tradition of the other titles in the First Year™ series, The First Year™—Lupus uses a unique approach—guiding readers through their first seven days following diagnosis, then the next three weeks of their first month, and finally the next eleven months of their first year—to provide answers and advice that will help everyone newly diagnosed with lupus come to terms with their condition and the lifestyle changes that accompany it.

Lupus, The New Black Cancer approaches the disease from a societal, ethical, and researched based standpoint that identifies diagnosis related to variables that have not been identified before. This book is more relevant and current.

The Lupus Book: A Guide for Patients and Their Families 5th Edition
by Daniel J. Wallace (Author)
Lupus, a disease of the immune system, can be quite deadly, claiming the lives of thousands of patients yearly. Dr. Daniel J. Wallace is one of the world's leading authorities on this disorder, an eminent clinician who has treated over 3000 lupus patients, the largest such practice in America. His The Lupus Book, originally published in 1995, immediately established itself as the most readable and helpful book on the disease.

Lupus, The New Black Cancer can support patients and their families based on current research and identifiable needs.

Coping with Lupus, 4th Edition Paperback – April 3, 2012
by Robert H. Phillips (Author)
A completely updated and revised edition that provides comfort, information, strategies, and advice for those living with lupus.
There is no cure for lupus, so a diagnosis of this potentially debilitating autoimmune disorder is understandably disquieting. This new edition of Coping with Lupus answers all the important questions one might have and offers practical coping strategies to help those with lupus live their lives to the fullest

Lupus, The New Black Cancer brings a currently and relevant look into how lupus is diagnosed and what types of other resources really need to be looked at to understand the complexities of this disease.

Samples

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The word lupus derives from the medieval Latin word “wolf.” It’s known in the lupus world as the great imitator. There are many different kinds of lupus, yet there is no cure.
See, your body makes a mistake. It’s not your fault. The exact causes of the disease are not known. It is believed that there is gene that can be inherited that makes some people more likely to develop the disease than others. Like any other possibilities in this world when it comes to illnesses, you may have this gene.
Lupus doesn’t discriminate. Man, woman, child, old, young, Black, White, Native, African, Alaskan, Chinese, we all are not immune. Along with the symptoms, there’s one particular test that talks up lupus. This test called ANA. Your immune system is your body’s natural defense against disease. ANA tests that your body is making an antibody. This protein reacts with components of cells in your body which then gives itself another name – antibody. When the protein reacts this is a condition called “autoimmunity.” The score here is that 2 out of every 10 people have a positive ANA test but it doesn’t mean that they have lupus.

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