Lupus Foundation of America Recommended Reading List

The following is a list of books recommended by the Lupus Foundation of America. Each featured book is based upon the author’s experience living and dealing with lupus.

Butterflies on My Mind: My Journey with Lupus and a Return to Wellness
by Phyllis Bass
Much more than a personal story, Phyllis’s account of the first 11 years of her life with lupus also provides important and useful information on the many ways her body was affected by the disease, in particular dealing with kidney failure and two subsequent kidney transplants. She also reveals her struggles to accept the loss of her healthy body and her dependence upon a dialysis machine to live, and, how, finally, with the unwavering support of her family. she is able find spiritual joy and peace in her life.

Diagnosis: Lupus – The Intimate Journal of a Lupus Patient
by Marilyn Celeste Morris
When the author was suddenly confronted with symptoms of joint pain and extreme fatigue, she undertook an intensive search to understand what eventually would be diagnosed as systemic lupus erythematosus. Through the pages of her intimate daily journal she takes the reader on a journey, from chronic joint pain, frustration, anger and grief for her former self, to her current state of remission. Far from being a list of complaints, the author’s pages reveal her unexpected spiritual growth and gratitude for life itself. In addition to this book the author has written both fiction and memoir.

What’s Lupus, Mama?
by Wanda O’Loughlin
A mother explains lupus and the importance of helping others when she takes her two young children to help a friend who is not feeling well. Charmingly illustrated by Virginia high school students Brennan O’Laughlin and Najee Freeman.

Gregory: The Life of a Lupus Warrior
by Gregory Garland Johnson and Sandra K. Johnson, Ph.D.
In the first part of this fascinating book, Gregory writes autobiographically about growing up in the 60s and 70s as a young black man in the South, and then being diagnosed with lupus in his sophomore year of college. In spite of receiving medical care, lupus complications ended Gregory’s life when he was only 35. Until then, he provided a picture of determination and fortitude that provided an example to all who knew him. His family found the manuscript of the autobiography among his things, but it wasn’t until 11 years later that his sister, Sandra, was able to take on the task of completing the second part of the story by writing the rest of the story as Gregory’s biography. Sandra herself is an important part of the story: The first black woman to earn a Ph.D. in electrical engineering in the U.S., who accumulated 35 patents and patent applications, and wrote more than 35 technical publications during her 20 years with IBM, Sandra was diagnosed with discoid lupus nine months after her brother died.

Julie’s Story: My Life With Lupus
by Julie Miller, M.S.W.
Julie was 24, planning her dream wedding to her college sweetheart and completing her Master’s degree in social work. She thought life couldn’t get much better. She hesitated to voice her concerns about vague symptoms because she “looked fine on the outside.” But when excruciating chest pain landed her in the hospital emergency room, her life changed forever. This is a touching story of a young woman’s hope and dreams, courage and triumph.

Lupus…It Takes a Family
by Joscelyn Derene Knight
This is a straightforward and remarkable account of how a family comes together to help one sister survive the mental, physical, and financial devastation of lupus, never giving in or giving up, and never forgetting that God’s hand is at work in all that happens in their lives. Joyce’s touching memoir describes the determination of one sister who was her steadfast patient advocate and caregiver, and another sister who donated a kidney without hesitation.

Lupus, My Doctor, and Me: A Sacred Dialogue
By Anita M. Fricklas and Stuart S. Kassan, M.D., FACP
LFA Recommended Reading List updated 7/31/11 Materials Review Panel items
A lupus patient and her physician take the reader on their personal journey into the world of lupus and other autoimmune diseases.

Peace in the Storm: Meditations on Chronic Pain and Illness
by Maureen Pratt, co-author of Taking Charge of Lupus
The author, who lives with lupus, fibromyalgia, Grave’s disease and vasculitis, is intimately aware of the toll that chronic pain and illness can take on patients and their families. In this practical and spiritual guide, she uses a combination of passages from the Bible and her own insights to provide help on issues such as dealing with isolation, finding the right doctor, rejoicing in the happiness of others, and mourning the loss of health. Written with honesty and understanding, this book can help readers to identify their own spiritual and physical needs. In one reviewer’s words, “Readers can find valuable daily inspiration and encouragement while leisurely reading through Peace in the Storm. It provides good food for thought and lifts a patient’s outlook on lupus.”


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