A Lupus Handbook: These Are the Faces of Lupus

By A. G. Moore

Recommended by the Lupus Foundation and updated with notes in 2017, A Lupus Handbook: These Are The Faces Of Lupus is both informative and a moving personal account.
Flannery O'Connor once wrote that sickness has no company--it is in defiance of this stark reality that A. G. Moore wrote her book. She was first diagnosed with lupus in 1996, though she dealt with its effects long before that. Through flares and remissions she strove to educate herself, to become informed. She wanted to be a participant in her own care, to shape as much as possible the course of her treatment and the quality of her life.
A disease like lupus often does not offer a lot of options, but there are always choices to be made. A. G. Moore was committed to knowing about those choices and to being a responsible partner in determining which of those choices was best for her.
This book is thoroughly documented. Sources for technical sections of the book are almost exclusively peer-reviewed journals. As for the brief biographical sketches she offers of eleven public figures--all of these individuals were diagnosed with lupus. In every case, the disease did not define a life, though in some cases it did take life. Each "celebrity" managed to forge a unique path despite lupus, not because of it.
A. G. Moore hopes every reader, every person with lupus or any disease, is able to do the same.

• Language: English
• Publisher: A. G. Moore
• Release date: Nov 7, 2011
• ISBN: 9781465813343

A. G. Moore

A Lupus Handbook: These Are the Faces of Lupus was my first published books. I offer the book to readers at no cost. Writing it has brought me great satisfaction and paved the way for future efforts. There have been many books since the publication of these first books. All of these are published under the name Rhythm Prism. The subject matter varies. Some are for young students and some are for adults. Please check out my website and my book page on Amazon. You are bound to see something that interests you.

Book preview

Introduction to Profiles

This was not an easy book to write. Culling through some of the personal stories was wrenching, though I found many of them, just about all of them, inspiring. While researching Flannery O’Connor’s life I was so affected that I had to take a six month break. Upon completing Inday Ba’s profile I tried, unsuccessfully, to contact her mother. And, after learning about Barbara Enright’s precedent-setting successes, I shamelessly engineered a brief encounter with her at the 2009 World Series of Poker Tournament.

Over the last seventeen years I have read a great deal about lupus--books, medical monographs, online blogs. Some of the material was clinical, some subjective, some simply, heartbreakingly, plaintive. I intend my effort here to have a broader scope than any of these. I aim to be candid and not to disguise unpleasant truths. For example, a recent study suggests that more than 92% of lupus patients experience anxiety.1 This fact appears in a medical journal but is not likely be found in less scholarly publications, which tend to assume an encouraging, even solicitous, tone.

In my experience, selectively presenting, or sugar-coating information does not instill confidence. On the contrary, it leaves patients poorly equipped to participate in their care and to make important decisions. If people want to read up on a disease, then they deserve to understand the facts. It might be reassuring to learn that anxiety is not necessarily a personality flaw, or an indication that a patient is not adjusting well to being ill. Anxiety, they would discover, can be a symptom of lupus. I also think acknowledgment of this would encourage doctors to treat patients holistically, to address anxiety, gastrointestinal problems, arthritis, etc, as part of an organized disease process. When patient and doctor openly exchange information they can operate more cooperatively and successfully.

The first time a rheumatologist said the word lupus to me, I was going full steam in a new career and was finishing up the requirements for a masters degree. I was also married and raising two high school age children. There was no room for illness, but illness would not go away. Neither would any doctor say with certainty what it was that was messing up my life. Only once had the word lupus been mentioned as a possible explanation.

For more than four years I struggled through remissions and flares. Finally, physically and emotionally depleted, I stopped working. Several months later the lupus diagnosis was pronounced. It would take another ten years, however, for an effective treatment plan to be designed--one that would enable me to lead a somewhat manageable existence.

In all those four years, between the first suspicious symptoms and the eventual certitude of a diagnosis, I was sick. The absence of classification did not make me any less sick.

So many people are ill with this disease, or one like it, and they do not present with the clinical clarity that would induce a doctor to say, Yes, you have lupus, or No, you definitely do not have lupus. These people suffer, though no doctor has given their suffering a label. As hard as it is to be ill, it is harder to be ill and yet beyond the pale of medical treatment because nobody can figure out what is wrong with you.

These Are The Faces of Lupus is for everyone: those who have been diagnosed, those who might be, those who are doing research because they don’t feel well and want to know more. The book is also for family, friends and anyone who is simply curious.

My research is responsible, my sources legitimate. I do not attempt a detailed discussion of the biochemical aspects of this disease, though I refer the interested to literature that can examine such issues. There are appendices and glossaries, for people who love definition, as I do.

The reader will not find within this book an extended narrative of my experience with lupus, though I use my experience sometimes to illustrate a point. The personal profiles that are provided are of extraordinary people. I hope I do them justice, for they represent countless others who may not be well-known, but whose lives were touched, sometimes tragically, by a disease called lupus.

Part I

The Profiles

Introduction

It is not known how many people have lupus in the world. At best, only a rough estimate can be made because of the difficulty in diagnosing this chameleon-like illness. Whether the number is one in five hundred, one in five thousand or one in fifty thousand, this statistic represents individuals who deal with the challenges of illness every day of their lives.

As Flannery O’Connor once observed, illness is an isolating condition. The abundance of Internet forums dedicated to different diseases attests to this loneliness. Sick people reach out to others similarly affected. They are comforted by association and they learn by shared experience. The Internet phenomenon prompted me to include in my book profiles of personalities who have coped with lupus. Many of the names I mention will be easily recognized. Some are less well known. Every profile, however, is a story that I find instructive.

Lupus is a chronic disease, one of many autoimmune illnesses. It is not uniquely unpleasant or unfair, although it does have a unique set of symptoms. Everyone gets sick eventually. It is part of the human condition. Learning about lupus, or any chronic disease, has universal applicability. While the profiles in the book are not exactly parables, I hope they serve a similar function. Each person confronting this disease had life, family, ambition. Some lost their lives. Every one dealt with family and ambition differently. Whatever the manner and outcome of their struggle, at the end all shared one thing with each other and with us-their humanity.

Chapter 1

Hannelore Kohl

German Chancellor Helmut Kohl's Wife

It was about a quarter to nine in the morning. The pool at the Mirage Hotel opened at 9:00 sharp and my husband wanted to be there at exactly that moment so he could grab a prime chair. He tucked a water-warped potboiler under his arm and positioned a pair of impenetrable sunglasses on his nose, then bade me farewell. I strolled over to the window and looked below for his lanky form to appear on the patio. We always asked for a room with a pool view, so we could connect from a distance, each of us in our place, suiting ourselves with an activity that gave us pleasure.

The deck was not crowded: mornings tend to be quiet in Las Vegas. My husband, tall and square, moved languidly through the rows of chaise lounge and stopped at his preferred station. He stretched out indolently, his already tan skin inviting more unfiltered, cancer-inducing rays. I turned from the window and closed the curtains. My hot coffee had cooled to a comfortable temperature and the butter had melted invitingly on my over-sized roll. I unfolded the Las Vegas Review Journal and began to read, headlines first, then local news. On page two, an article about ex-Chancellor Helmut Kohl's wife caught my eye. She had committed suicide. I read on. She was depressed, the report said, because she had been forced by a severe sun allergy to lead a reclusive life in the country. The allergy was not only to sun, but to bright lights; exposure to light caused an extremely painful reaction. I put the paper down. It all sounded so familiar.

Some years before, when I was forty-five, a doctor raised the possibility that I might have lupus. Four years later, that possibility became a diagnosis. Many more years went by before a rheumatologist came up with a protocol for controlling my disease. This progression of illness and treatment is not unusual for lupus, a very idiosyncratic disease with a wide array of symptoms. Photosensitivity is just one of lupus’ many clinical aspects, and affects as much as 50% of systemic lupus patients.1 I am part of that 50%.

I cannot tolerate sunlight and am sensitive even to certain types of artificial light. My reaction goes beyond rashes and skin discoloration;with sufficient exposure, it manifests with full-blown systemic inflammation. To complicate matters, I am also allergic to chemical sunscreens. Thus, I have learned to live an odd kind of life, out of the sun and away from direct UV radiation, such as is found in fluorescent lighting. I’ve accumulated a wardrobe of hats in different styles and colors. Most of my summer shirts are long sleeved and can be rolled down against UV exposure should I end up in an inhospitable environment. My husband has become expert at spotting the one table in a restaurant or chair in an airport that isn’t bathed in overhead lighting. And when we go to Las Vegas, he spends mornings at the pool, within view, and I spend that time relaxing in our room--resting, reading and writing.

Maybe Mrs. Kohl didn’t have lupus, but it sure sounds to me as though she did. And it sure sounds as though her disease had a devastating effect on her. She was alone when she died; her allergy separated her from her husband and the life she previously enjoyed. I learned later that her light allergy started as a reaction to penicillin, and I recalled my own allergy to penicillin, which first expressed as arthritis, and in a subsequent event as hives.

I surveyed the color-coordinated furnishings in my hotel room and savored the taste of my now-cool coffee. I felt a deep sympathy for Hannelore Kohl. Not only was her photosensitivity very possibly related to a systemic illness like lupus, but so, probably, was her depression. Something like 80 % of all lupus patients experience a disturbance in their emotional equilibrium as a direct result of the disease2. I could not help thinking that, with the proper medical and personal support, the outcome might have been very different for Mrs. Kohl.

I appreciated at that moment, as I have many times before, that despite the difficulties I have experienced because of lupus, I am very lucky. My lupus is mild and I receive excellent medical care. My husband is loving and supportive. He makes accommodations so that we are able to go away together, and so that I may live a happy, full life. Hannelore Kohl, and untold other patients, have not been so fortunate.

This book is for them. It is from a friend and a peer. I intend the book to be a resource for people seeking information and I would like it also to provide support for those who might not find it elsewhere. Lupus is not an abstract concept--it happens to people (and animals, too, it turns out, like President George H. W. Bush’s dog, Millie).3 Consequently, I have written book not about statistics and laboratory tests (though these elements exist here, especially in part two) but about the way lupus affects lives.

I hope all of us, with lupus or without, will see something of ourselves in the individuals I describe, as I saw myself in the