About a year ago, Liam and I were honored to be asked to write the foreword to an excellent book, “Clostridium difficile: A Patient’s Guide.” The book, written by Chris O’Neal, who, along with his wife, survived a terrible bout of C. diff several years ago, and his doctor Raf Sid Rizk, MD, is one of the few resources that is written for patients by patients. Even for people like us, who are marinating in C. diff information daily, the book’s accessible language and personal take on being stricken by this infection, is extremely helpful. If you or a loved one has had C. diff, this is an excellent resource.
Like all of our other work to raise awareness of C. diff, we do this for our mother, the others we have lost to this preventable disease, and all those who are struggling with it. – Christian
Foreword to “Clostridium difficile: A Patient’s Guide”
Clostridium difficile (C. diff) is among the most dangerous and least known public health threats facing the United States today. In an era when many of the better-known healthcare associate infections are decreasing, such as methicillin-resistant Staphylococcus aureus (MRSA), pneumonia, and central-line associated blood infections, C. diff is on the rise. In fact, the Centers for Disease Control and Prevention estimate that half a million Americans will be diagnosed with a C. diff infection this year.
From the time of its discovery nearly 50 years ago, C. diff was largely considered a disease of the old and infirm, an infection linked with nursing homes, where it often sickened but rarely killed. That pigeonhole has limited public awareness. Today, most Americans first learn of the disease upon receiving a diagnosis affecting them or a loved one. That’s what set our learning curve in motion.
Our mother, Peggy Lillis, was a 56-year-old Irish-Catholic kindergarten teacher in Brooklyn, New York. Though she would admit to needing to lose a few pounds, she was a healthy, robust, and active mom, educator, and beloved member of her community. In her entire life, she had been hospitalized twice, both times to give birth. Like most any teacher, she could catch the occasional cold, flu or stomach bug from her students. Yet most of the time, she didn’t even miss work.
That changed when Mom was prescribed the antibiotic clindamycin. A few days into taking the antibiotic, Mom came down with what appeared to be stomach flu. Less than a week later, she died in a local hospital on April 21, 2010 only 36 hours after being admitted. It was during her stay in the hospital that we first learned of C. diff.
We want to be clear. The vast majority of people who have or will contract a C. diff infection will not suffer Mom’s fate. Though cases like our mother’s are increasing, they remain statistical outliers. Still, the estimated 300 people who died each day from a C. diff infection is a terrible and preventable toll.
In the weeks following our mother’s death, we desperately searched for information to help us understand what happened to her. All we could find was written for doctors and researchers by doctors and researchers. There was very little accessible information written with a patient focus.
We also learned of four other people in our circle of friends and family who died from C. diff-related causes that same spring, including a Brooklyn man in his 60s that had a cabana near ours at the beach club, who was being treated for an otherwise non-lethal cancer; a woman in her 40s who was living with multiple sclerosis; and the mother of dear family friends, the Mulligans, who, while in her 80s was in good shape until she acquired C. diff during a hospital stay. In addition to those who lost their lives to C. diff, we found that we knew other people who, while made very ill, ultimately survived their bout with the bacteria.
That is why we are so pleased that Doctors O’Neal and Rizk have written this book.
The dearth of easily understandable knowledge about C. diff for those facing the infection firsthand or those at risk and their families helps to fuel this epidemic. We founded The Peggy Lillis Memorial Foundation to change that. In the year since Mom died, we have informed ourselves and worked to inform others via the foundation’s Web site, public service announcement, and other advocacy.
Since launching the foundation, we have encountered so many people who, while surviving their C. diff infections, had their lives change forever. In one case, a woman in her 30s who was working as a model struggled with C. diff for months. Though, she survived, the constant diarrhea and dehydration, along with huge amount of antibiotics, have irreparably damaged her gastrointestinal and nervous systems. We have also heard horrifying stories from women who acquired C. diff after giving birth, and even parents of small children who have been afflicted.
We laud the efforts of volunteers, like those who run the online C. diff discussion forum, and those healthcare workers who are on the frontlines of this epidemic every single day, but only a shift in policy will truly address the root causes of this epidemic. Among the policy changes the foundation works toward are stricter antibiotic stewardship policies. Few guidelines exist for appropriate use of antibiotics, and they are often prescribed unnecessarily. In fact, 20 to 30 percent of antibiotic prescriptions are written for the common cold, a virus, for which they are completely ineffective. This misuse harms not only the person taking a drug unnecessarily, but also the entire community by lessening the drug’s effectiveness.
Another area of focus is making C. diff a reportable disease. Currently, only California requires incidences of C. diff infections to be reported to the state, and that law is less than a year old. In order to effectively combat any infectious disease, public health workers must first know where there are outbreaks, the populations that are being afflicted, and how the disease is trending. Without a reportability law, the vast majority of C. diff infections–including those that are fatal–are not recorded. Public health officials and scientists lack the most basic statistics necessary to spot emerging trends, changes in patient populations, and increases in mortality and morbidity.
Policy changes only come when enough people know the damage that C. diff inflicts. That is why educating healthcare workers and consumers is the first step in minimizing death and disability. This book is a critical part of that educational work. While many healthcare workers have heard of C. diff, the general public remains mostly in the dark. As with HIV and tuberculosis, an educated and informed public is key to prevention. There are a great many compassionate doctors and scientists working to ameliorate the damage C. diff causes. But they cannot do it alone. Ordinary Americans, as healthcare consumers, need to demand better reporting and more thorough prevention measures.
Our mother believed deeply in education as a powerful force to create change. That’s why we are happy to be working with Doctors O’Neal and Rizk to educate the public and raise awareness of this growing public health threat. We hope you find the book accessible and useful in your or your loved one’s recovery from C. diff. To help educate others, we also hope you will use your experience, the information in this book, and the tools The Peggy Lillis Memorial Foundation is providing at www.fightcdiff.org.
We wish you the best in your recovery.
Christian John Lillis & Liam Lillis
Co-founders, The Peggy Lillis Memorial Foundation