Squint: My Journey with Leprosy

Univ. Press of Mississippi
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Lying in a hospital bed, Jos P. Ramirez, Jr. (b. 1948) almost lost everything because of a misunderstood disease. When the health department doctor gave him the Handbook for Persons with Leprosy, Ramirez learned his fate. Such a diagnosis in 1968 meant exile and hospitalization in the only leprosarium in the continental United States--Carville, Louisiana, 750 miles from his home in Laredo, Texas. In Squint: My Journey with Leprosy, Ramirez recalls being taken from his family in a hearse and thrown into a world filled with fear. He and his loved ones struggled against the stigma associated with the term "leper" and against beliefs that the disease was a punishment from God, that his illness was highly communicable, and that persons with Hansen's disease had to be banished from their communities. His disease not only meant separation from the girlfriend who would later become his wife, but also a derailment of all life's goals. In his struggle Ramirez overcame barriers both real and imagined and eventually became an international advocate on behalf of persons with disabilities. In Squint, titled for the sliver of a window through which persons with leprosy in medieval times were allowed to view Mass but not participate, Ramirez tells a story of love and perseverance over incredible odds. Jos P. Ramirez, Jr., is a social worker in Houston, Texas. He has written articles about Hansen's disease for the Houston Chronicle, the Star Magazine, the National Association of Social Workers Newsletter, and other publications.
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Additional Information

Publisher
Univ. Press of Mississippi
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Published on
Dec 31, 2009
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Pages
220
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ISBN
9781604733396
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Language
English
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Genres
Medical / Health Care Delivery
Medical / Infectious Diseases
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Content Protection
This content is DRM free.
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Available on Android devices
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From one of the country's foremost doctors comes a ground-breaking book about diagnosing, treating and healing Lyme, and peeling away the layers that lead to chronic disease.

You may not know that you have Lyme. It can mimic every disease process including Chronic Fatigue Syndrome, Fibromyalgia, autoimmune conditions like MS, psychiatric conditions like depression and anxiety, and cause significant memory and concentration problems, mimicking early dementia. It is called the "Great Imitator," and inaccurate testing-combined with a fierce, ongoing debate that questions chronic infection-makes it difficult for sufferers to find effective care.

When Dr. Richard Horowitz moved to the Hudson Valley over two decades ago to start his own medical practice, he had no idea that he was jumping into a hotbed of Lyme disease. He would soon realize that many of the chronic disease diagnoses people were receiving were also the result of Lyme-and he would discover how once-treatable infections, in the absence of timely intervention, could cause disabling conditions. In a field where the number of cases is growing exponentially around the world and answers remain elusive, Dr. Horowitz has treated over 12,000 patients and made extraordinary progress. His plan represents a crucial paradigm shift, without which the suffering will continue.

In this book, Dr. Horowitz:

- Breaks new ground with a 16 Point Differential Diagnostic Map, the basis for his revolutionary Lyme treatment plan, and an overarching approach to treating all chronic illness.

- Introduces MSIDS, or Multiple Systemic Infectious Disease Syndrome, a new lens on chronic illness that may prove to be an important missing link.

- Covers in detail Lyme's leading symptoms and co-infections, including immune dysfunction, sleep disorders, chronic pain and neurodegenerative disorders - providing a unique functional and integrative health care model, based on the most up-to-date scientific research, for physicians and health care providers to effectively treat Lyme and other chronic illnesses.

Cutting through the frustration, misinformation and endless questions, Dr. Horowitz's enlightening story of medical discovery, science and politics is an all-in-one source for patients of chronic illness to identify their own symptoms and work with their doctors for the best possible treatment outcome.

Sorrel King was a 32-year-old mother of four when her eighteen-month-old daughter, Josie, was horribly burned by water from a faulty water heater in the family’s new Baltimore home. She was taken to Johns Hopkins—renowned as one of the best hospitals in the world—and Sorrel stayed in the hospital with Josie day-in and day-out until she had almost completely recovered. Just before her discharge, however, Sorrel noticed something was wrong—Josie was looking pale, she appeared severely dehydrated, and her eyes were rolling back in her head. Sorrel pleaded with the doctors and nurses (many of whom she had become close to) that something was wrong, and they agreed to stop administering Josie methadone, the narcotic they were using to wean her off morphine. Josie had begun noticeably improving when a new nurse approached her with a syringe of methadone. When Sorrel tried to stop her from administering the drug, the nurse said that the orders had been changed again. Sorrel, against her better judgment, decided that Hopkins must know best, and stepped back. Almost as soon as the drug had been injected into Josie’s system, she went into cardiac arrest. The doctors raced to save her, but by the time they stabilized her, Josie was brain dead, her organs shutting down one by one. She passed away shortly thereafter, her family having made the choice to take her off life support.


In the days and months that followed, Sorrel went through the tumultuous processes of grieving. For a while, she thought she would not survive; suicide and alcohol both seemed like viable escape possibilities, and Sorrel toyed with both. But ultimately it was her rage that kept her alive—rage at the doctors, at Hopkins, and at the medical institution that had allowed this to happen. She wanted the doctors to feel the same pain she had caused them. She wanted to destroy Hopkins “brick by brick.” Dizzy with grief, she came close to ending her marriage, but slowly pulled herself and her life back together, for the sake of her family, and for the memory of Josie.


It was around this time that Sorrel learned a staggering fact—though indeed an error, Josie’s death wasn’t a fluke in the statistical sense of the word. About 98,000 American patients die a year as the result of medical error, making it the fourth most prevalent cause of death in the US. Armed with this fact, the money from her settlement with Hopkins, and a vague awareness that Josie’s death could have been prevented, Sorrel began to penetrate the healthcare industry. An appearance on Good Morning America and a long article in the Baltimore Sun raised the public profiles of her and her mission, while speaking requests began to pour in from hospitals and healthcare groups across the world. For the most part, medical errors had simply not been talked about; most doctors involved in them were paralyzed by remorse and fear of lawsuits, while the patients were dead or badly injured and their families crippled by grief. Sorrel was helping to pull back the curtain on an all-too-common killer, and the world of healthcare knew it. Despite some initial resistance, most in the industry came to welcome her message, and to look to her for answers. With the help of other patient safety advocates—many of them doctors, and some of them the very Hopkins officials who had defended the hospital after Josie’s death—Sorrel and The Josie King Foundation began to develop and implement in hospitals basic programs that emphasize communication, respect of the patient, and attentiveness to their concerns. Rapid Response Teams, for instance, can be called from the beside by patients or their families who feel they are experiencing a serious change in their condition that is not getting sufficient attention from hospital floor staff. A team made up of doctors, nurses and a patient relations coordinator responds quickly to evaluate the patient and develop a plan for care. This is just one example of a program that came out of Sorrel’s efforts, and it’s in place in hospitals across the country, and has saved countless lives.


Sorrel’s account of her unlikely path from grieving parent to nationally renowned advocate is interwoven with descriptions of her and her family’s slow but steady road to recovery, and ends with a deeply affecting description of a ski trip they took recently. The sun is shining, her children are healthy, and they are all profoundly happy—a condition that Sorrel has learned to appreciate all the more for Josie.

The book ends with a resource guide for patients, their families, and healthcare providers; it includes information about how to best manage a hospital stay and how to handle a medical error if one does occur. Two prominent characters from the story, Hopkins’ lawyer Rick Kidwell and Paul Bekman, the personal injury attorney who handled the case for the King family, have come together to contribute advice in a Q & A section, and Sorrel also provides lists of general advice, useful online resources, and essential books on the subject.
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