Human Microbiome Project

From Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Human_Microbiome_Project

 

Human Microbiome Project (HMP)
Owner	US National Institutes of Health
Established	2007
Disestablished	2016
Website	hmpdacc.org

The Human Microbiome Project (HMP) was a United States National Institutes of Health (NIH) research initiative to improve understanding of the microbiota involved in human health and disease. Launched in 2007, the first phase (HMP1) focused on identifying and characterizing human microbiota. The second phase, known as the Integrative Human Microbiome Project (iHMP) launched in 2014 with the aim of generating resources to characterize the microbiome and elucidating the roles of microbes in health and disease states. The program received $170 million in funding by the NIH Common Fund from 2007 to 2016.

Important components of the HMP were culture-independent methods of microbial community characterization, such as metagenomics (which provides a broad genetic perspective on a single microbial community), as well as extensive whole genome sequencing (which provides a "deep" genetic perspective on certain aspects of a given microbial community, i.e. of individual bacterial species). The latter served as reference genomic sequences — 3000 such sequences of individual bacterial isolates are currently planned — for comparison purposes during subsequent metagenomic analysis. The project also financed deep sequencing of bacterial 16S rRNA sequences amplified by polymerase chain reaction from human subjects.

Introduction

Depiction of prevalences of various classes of bacteria at selected sites on human skin

Prior to the HMP launch, it was often reported in popular media and scientific literature that there are about 10 times as many microbial cells and 100 times as many microbial genes in the human body as there are human cells; this figure was based on estimates that the human microbiome includes around 100 trillion bacterial cells and an adult human typically has around 10 trillion human cells. In 2014 the American Academy of Microbiology published a FAQ that emphasized that the number of microbial cells and the number of human cells are both estimates, and noted that recent research had arrived at a new estimate of the number of human cells at around 37 trillion cells, meaning that the ratio of microbial to human cells is probably about 3:1. In 2016 another group published a new estimate of ratio as being roughly 1:1 (1.3:1, with "an uncertainty of 25% and a variation of 53% over the population of standard 70 kg males").

Despite the staggering number of microbes in and on the human body, little was known about their roles in human health and disease. Many of the organisms that make up the microbiome have not been successfully cultured, identified, or otherwise characterized. Organisms thought to be found in the human microbiome, however, may generally be categorized as bacteria, members of domain Archaea, yeasts, and single-celled eukaryotes as well as various helminth parasites and viruses, the latter including viruses that infect the cellular microbiome organisms (e.g., bacteriophages). The HMP set out to discover and characterize the human microbiome, emphasizing oral, skin, vaginal, gastrointestinal, and respiratory sites.

The HMP will address some of the most inspiring, vexing and fundamental scientific questions today. Importantly, it also has the potential to break down the artificial barriers between medical microbiology and environmental microbiology. It is hoped that the HMP will not only identify new ways to determine health and predisposition to diseases but also define the parameters needed to design, implement and monitor strategies for intentionally manipulating the human microbiota, to optimize its performance in the context of an individual's physiology.

The HMP has been described as "a logical conceptual and experimental extension of the Human Genome Project." In 2007 the HMP was listed on the NIH Roadmap for Medical Research as one of the New Pathways to Discovery. Organized characterization of the human microbiome is also being done internationally under the auspices of the International Human Microbiome Consortium. The Canadian Institutes of Health Research, through the CIHR Institute of Infection and Immunity, is leading the Canadian Microbiome Initiative to develop a coordinated and focused research effort to analyze and characterize the microbes that colonize the human body and their potential alteration during chronic disease states.

Contributing Institutions

The HMP involved participation from many research institutions, including Stanford University, the Broad Institute, Virginia Commonwealth University, Washington University, Northeastern University, MIT, the Baylor College of Medicine, and many others. Contributions included data evaluation, construction of reference sequence data sets, ethical and legal studies, technology development, and more.

Phase One (2007-2014)

The HMP1 included research efforts from many institutions. The HMP1 set the following goals:

• Develop a reference set of microbial genome sequences and to perform preliminary characterization of the human microbiome
• Explore the relationship between disease and changes in the human microbiome
• Develop new technologies and tools for computational analysis
• Establish a resource repository
• Study the ethical, legal, and social implications of human microbiome research

Phase Two (2014-2016)

In 2014, the NIH launched the second phase of the project, known as the Integrative Human Microbiome Project (iHMP). The goal of the iHMP was to produce resources to create a complete characterization of the human microbiome, with a focus on understanding the presence of microbiota in health and disease states. The project mission, as stated by the NIH, was as follows:

The iHMP will create integrated longitudinal datasets of biological properties from both the microbiome and host from three different cohort studies of microbiome-associated conditions using multiple "omics" technologies.

The project encompassed three sub-projects carried out at multiple institutions. Study methods included 16S rRNA gene profiling, whole metagenome shotgun sequencing, whole genome sequencing, metatranscriptomics, metabolomics/lipidomics, and immunoproteomics. The key findings of the iHMP were published in 2019.

Pregnancy & Preterm Birth

The Vaginal Microbiome Consortium team at Virginia Commonwealth University led research on the Pregnancy & Preterm Birth project with a goal of understanding how the microbiome changes during the gestational period and influences the neonatal microbiome. The project was also concerned with the role of the microbiome in the occurrence of preterm births, which, according to the CDC, account for nearly 10% of all births and constitutes the second leading cause of neonatal death. The project received $7.44 million in NIH funding.

Onset of Inflammatory Bowel Disease (IBD)

The Inflammatory Bowel Disease Multi'omics Data (IBDMDB) team was a multi-institution group of researchers focused on understanding how the gut microbiome changes longitudinally in adults and children suffering from IBD. IBD is an inflammatory autoimmune disorder that manifests as either Crohn's disease or ulcerative colitis and affects about one million Americans. Research participants included cohorts from Massachusetts General Hospital, Emory University Hospital/Cincinnati Children's Hospital, and Cedars-Sinai Medical Center.

Onset of Type 2 Diabetes (T2D)

Researchers from Stanford University and the Jackson Laboratory of Genomic Medicine worked together to perform a longitudinal analysis on the biological processes that occur in the microbiome of patients at risk for Type 2 Diabetes. T2D affects nearly 20 million Americans with at least 79 million pre-diabetic patients, and is partially characterized by marked shifts in the microbiome compared to healthy individuals. The project aimed to identify molecules and signaling pathways that play a role in the etiology of the disease.

Achievements

The impact to date of the HMP may be partially assessed by examination of research sponsored by the HMP. Over 650 peer-reviewed publications were listed on the HMP website from June 2009 to the end of 2017, and had been cited over 70,000 times. At this point the website was archived and is no longer updated, although datasets do continue to be available.

Major categories of work funded by HMP included:

• Development of new database systems allowing efficient organization, storage, access, search and annotation of massive amounts of data. These include IMG, the Integrated Microbial Genomes database and comparative analysis system; IMG/M, a related system that integrates metagenome data sets with isolate microbial genomes from the IMG system; CharProtDB, a database of experimentally characterized protein annotations; and the Genomes OnLine Database (GOLD), for monitoring the status of genomic and metagenomic projects worldwide and their associated metadata.
• Development of tools for comparative analysis that facilitate the recognition of common patterns, major themes and trends in complex data sets. These include RAPSearch2, a fast and memory-efficient protein similarity search tool for next-generation sequencing data; Boulder ALignment Editor (ALE), a web-based RNA alignment tool; WebMGA, a customizable web server for fast metagenomic sequence analysis; and DNACLUST, a tool for accurate and efficient clustering of phylogenetic marker genes.
• Development of new methods and systems for assembly of massive sequence data sets. No single assembly algorithm addresses all the known problems of assembling short-length sequences, so next-generation assembly programs such as AMOS are modular, offering a wide range of tools for assembly. Novel algorithms have been developed for improving the quality and utility of draft genome sequences.
• Assembly of a catalog of sequenced reference genomes of pure bacterial strains from multiple body sites, against which metagenomic results can be compared. The original goal of 600 genomes has been far surpassed; the current goal is for 3000 genomes to be in this reference catalog, sequenced to at least a high-quality draft stage. As of March 2012, 742 genomes have been cataloged.
• Establishment of the Data Analysis and Coordination Center (DACC), which serves as the central repository for all HMP data.
• Various studies exploring legal and ethical issues associated with whole genome sequencing research.

Developments funded by HMP included:

• New predictive methods for identifying active transcription factor binding sites.
• Identification, on the basis of bioinformatic evidence, of a widely distributed, ribosomally produced electron carrier precursor
• Time-lapse "moving pictures" of the human microbiome.
• Identification of unique adaptations adopted by segmented filamentous bacteria (SFB) in their role as gut commensals. SFB are medically important because they stimulate T helper 17 cells, thought to play a key role in autoimmune disease.
• Identification of factors distinguishing the microbiota of healthy and diseased gut.
• Identification of a hitherto unrecognized dominant role of Verrucomicrobiota in soil bacterial communities.
• Identification of factors determining the virulence potential of Gardnerella vaginalis strains in vaginosis.
• Identification of a link between oral microbiota and atherosclerosis.
• Demonstration that pathogenic species of Neisseria involved in meningitis, sepsis, and sexually transmitted disease exchange virulence factors with commensal species.

Milestones

Reference database established

On 13 June 2012, a major milestone of the HMP was announced by the NIH director Francis Collins. The announcement was accompanied with a series of coordinated articles published in Nature and several journals including the Public Library of Science (PLoS) on the same day. By mapping the normal microbial make-up of healthy humans using genome sequencing techniques, the researchers of the HMP have created a reference database and the boundaries of normal microbial variation in humans.

From 242 healthy U.S. volunteers, more than 5,000 samples were collected from tissues from 15 (men) to 18 (women) body sites such as mouth, nose, skin, lower intestine (stool) and vagina. All the DNA, human and microbial, were analyzed with DNA sequencing machines. The microbial genome data were extracted by identifying the bacterial specific ribosomal RNA, 16S rRNA. The researchers calculated that more than 10,000 microbial species occupy the human ecosystem and they have identified 81 – 99% of the genera. In addition to establishing the human microbiome reference database, the HMP project also discovered several "surprises", which include:

• Microbes contribute more genes responsible for human survival than humans' own genes. It is estimated that bacterial protein-coding genes are 360 times more abundant than human genes.
• Microbial metabolic activities; for example, digestion of fats; are not always provided by the same bacterial species. The presence of the activities seems to matter more.
• Components of the human microbiome change over time, affected by a patient disease state and medication. However, the microbiome eventually returns to a state of equilibrium, even though the composition of bacterial types has changed.

Clinical application

Among the first clinical applications utilizing the HMP data, as reported in several PLoS papers, the researchers found a shift to less species diversity in vaginal microbiome of pregnant women in preparation for birth, and high viral DNA load in the nasal microbiome of children with unexplained fevers. Other studies using the HMP data and techniques include role of microbiome in various diseases in the digestive tract, skin, reproductive organs and childhood disorders.

Pharmaceutical application

Pharmaceutical microbiologists have considered the implications of the HMP data in relation to the presence / absence of 'objectionable' microorganisms in non-sterile pharmaceutical products and in relation to the monitoring of microorganisms within the controlled environments in which products are manufactured. The latter also has implications for media selection and disinfectant efficacy studies.

Disability studies

From Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Disability_studies 

Disability studies is an academic discipline that examines the meaning, nature, and consequences of disability. Initially, the field focused on the division between "impairment" and "disability," where impairment was an impairment of an individual's mind or body, while disability was considered a social construct. This premise gave rise to two distinct models of disability: the social and medical models of disability. In 1999 the social model was universally accepted as the model preferred by the field. However, in recent years, the division between the social and medical models has been challenged.Additionally, there has been an increased focus on interdisciplinary research. For example, recent investigations suggest using "cross-sectional markers of stratification" may help provide new insights on the non-random distribution of risk factors capable of acerbating disablement processes.

Disability studies courses include work in disability history, theory, legislation, policy, ethics, and the arts. However, students are taught to focus on the lived experiences of individuals with disabilities in practical terms. The field is focused on increasing individuals with disabilities access to civil rights and improving their quality of life.

Disability studies emerged in the 1980s primarily in the US, the UK, and Canada. In 1986, the Section for the Study of Chronic Illness, Impairment, and Disability of the Social Science Association (United States) was renamed the Society for Disability Studies. The first US disabilities studies program emerged in 1994 at Syracuse University. The first edition of the Disabilities Studies Reader (one of the first collections of academic papers related to disability studies) was published in 1997. The field grew rapidly over the next ten years. In 2005, the Modern Language Association established disability studies as a "division of study".

While Disability Studies primarily emerged in the US, the UK, and Canada, disability studies were also conducted in other countries through different lens. For instance, Germany looks at Queer Disability Studies since the beginning of the early 20th century. The Disability Studies in Germany are influenced by the written literary works of feminist sexologist who study how being disabled affects one's sexuality and ability to feel pleasure. In Norway, Disability Studies are focused in the literary context.

A variation emerged in 2017 with the first Accessibility Studies program at Central Washington University with an interdisciplinary focus on social justice, universal design, and international Web Accessibility Guidelines (WAG3) as a general education knowledge base.

History

Universities have long studied disabilities from a clinical perspective. In 1986, the Section for the Study of Chronic Illness, Impairment, and Disability of Social Science Association was renamed the Society for Disability Studies and its journal Disability Studies Quarterly was the first journal in disability studies. The first US disabilities studies program emerged in 1994 at Syracuse University. However, courses and programs were very few. In the 1997 first edition of the Disability Studies Reader, Lennard J. Davis wrote that "it had been virtually impossible to have someone teaching about disability within the humanities". In the second edition, written ten years later, he writes that "all that has changed", but "just because disability studies is on the map, does not mean that is easy to find".

Still the field continued to grow throughout the 2000s. In 2009 Disability Studies Quarterly published A Multinational Review of English-language Disability Studies Degrees and Courses. They found that from 2003 to 2008 the number of disability studies stand-alone studies programs in the US, UK, Australia, New Zealand, and Canada grew from 56 to 108 and the number of degree-granting programs grew from 212 to 420. A total of 17 degrees in disability studies were offered, with 11 programs in the US, 2 in the UK, 3 in Canada, and 1 in Australia.

The 2014 article "Disability Studies: A New Normal" in The New York Times suggests that the expansion in disability studies programs is related to the 1990 passage of the Americans with Disabilities Act (ADA). Those raised after the passage of the ADA have entered colleges and the workforce, as Disability Studies has grown. In a 2014 article, Disability Studies Quarterly published an analysis on the relationships between student run groups and disability studies, from 2008 to 2012. Their article analyzes groups at four different universities and describes how professors have incorporated student activism into their curriculum and research.

Definitions

According to the transnational Society for Disability Studies:

Using an interdisciplinary, multidisciplinary approach. Disability sits at the intersection of many overlapping disciplines in the humanities, sciences, and social sciences. Programs in Disability Studies should encourage a curriculum that allows students, activists, teachers, artists, practitioners, and researchers to engage the subject matter from various disciplinary perspectives.

• Challenging the view of disability as an individual deficit or defect that can be remedied solely through medical intervention or rehabilitation by "experts" and other service providers. Rather, a program in Disability Studies should explore models and theories that examine social, political, cultural, and economic factors that define disability and help determine personal and collective responses to difference. At the same time, Disability Studies should work to de-stigmatize disease, illness, and impairment, including those that cannot be measured or explained by biological science. Finally, while acknowledging that medical research and intervention can be useful, Disability Studies should interrogate the connections between medical practice and stigmatizing disability.
• Studying national and international perspectives, policies, literature, culture, and history with an aim of placing current ideas of disability within their broadest possible context. Since attitudes toward disability have not been the same across times and places, much can be gained by learning from these other experiences.
• Encouraging participation by disabled students and faculty, and ensuring physical and intellectual access. Prioritizing leadership positions held by disabled people; at the same time, it is important to create an environment where contributions from anyone who shares the above goals are welcome.

Disability studies and medical humanities

The social model of disability is expanded to chronic illness and to the broader work of the medical humanities. Practitioners are working towards improving the healthcare for disabled people through disability studies. This multi-disciplinary field of inquiry draws on the experiences and perspectives of people with disabilities to address discrimination. Infinite Ability has done some preliminary work in India to introduce disability studies to medical students. The medical humanities movement advocates use of literature in exploring illness, from practitioner and patient perspectives, with graphic medicine as an emerging strategy that combines comics-style medium and illness narrative.

Intersectionality

Feminism introduces the inclusion of intersectionality in disability studies. It focuses on race, gender, sexuality, class and other related systems of oppression that can also intersect with having a disability. From a feminist standpoint, there is a large concern for grasping multiple positions and differences among social groups. Some research on intersectionality and disability has focused on the aspect of being part of two or more stigmatized groups and how these are contributing factors to multiple forms of harassment, the paradox known as "Double Jeopardy".

In academic settings and practices such as Gender or Women's Studies the course work does not always highlight ideals of intersectionality and identity. But Sri Craven highlights the fact that in academia students and professors don't look at history in a culmination of the intersecting identities but rather focus in one perspective. Craven and his colleagues include identities such as disability both mental and physical in an alternative course description to get students and faculty to think about identity, oppression and struggle in a new way.

Race

Recent scholarship has included studies that explore the intersection between disability and race. Christopher Bell's work publicly challenged disability studies to engage with race, calling it "white disability studies". His posthumous volume on Blackness and Disability further developed his analysis. These works engage with issues of neoliberal economic oppression. The 2009 publication of Fiona Kumari Campbell's Contours of Ableism: The Production of Disability and Abledness signaled a new direction of research — studies in ableism, moving beyond preoccupations with disability to explore the maintenance of abledness in sexed, raced and modified bodies. A. J. Withers' work critiques the social model of disability because, among other things, it erases the experiences of BIPOC people, women, trans and queer people and puts forward a more radical model of disability. Similarly, recent work has focused on the intersections of race and ethnicity with disability in the field of education studies and has attempted to bridge Critical Race Studies with disability studies. Other contemporary works, such as literary studies conducted by critic Sami Schalk explore the intersection of disability and race and the use of dis/ability as a metaphor within the genre of black women's speculative fiction. Collectively, these works reflect an effort to deal with complex histories of marking racially "othered" bodies as physically, psychologically, or morally deficient, and traces this history of scientific racism to contemporary dynamics. Empirical studies show that minority students are disproportionately more likely to be removed from class or school for "behavioral" or academic reasons, and far more likely to be labeled with intellectual or learning disabilities. The authors propose a union of critical race and disability studies, DisCrit, as an intersectional approach designed to analyzing the interaction between ableism, sexism, and racism.

In addition to work by individual scholars, disability studies organizations have also begun to focus on disability and race and gender. The Society for Disability Studies created the Chris Bell Memorial Scholarship to honor Bell's commitment to diversity in disability studies. Postsecondary disability studies programs increasingly engage with the intersectionality of oppression. The University of Manitoba offers a course on "Women with disabilities". Several recent masters' student research papers at York University focus on issues related to women with disabilities and people of African descent with disabilities.

Feminism

Feminism integrates the social and political aspects that makes a body oppressed while allowing empowerment to be present in acknowledging its culture. Scholars of Feminist Disability Studies include Rosemarie Garland-Thomson and Alison Kafer. Rosemarie Garland-Thomson explains that these related systems of oppression pervades all aspects of culture by "its structuring institutions, social identities, cultural practices, political positions, historical communities, and the shared human experience of embodiment". Garland-Thomson further describes that "identity based critical enterprises have enriched and complicated our understandings of social justice, subject formation, subjugated knowledges and collective action". Feminism works towards accessibility for everyone regardless of which societal oppressive behavior makes them a minority. Although physical adjustments are most commonly fought for in disability awareness, psychological exclusion also plays a major role oppressing people with disabilities. The intersection of disability and feminism is more common in American history than we think yet it does not show up in media, museums or archives that are dedicated to feminist work. Rachel Corbman, a professor of Women's, Gender and Sexuality Studies at Stony Brook University In New York highlights how the influence of lesbian feminist organizations like the "Disabled Lesbian Alliance (DLA)" are not represented in the archives of literature and documentation of events in the community. The DLA work close together to fight for visibility, accessibility and acceptance of individuals whether they are disabled, or lesbian or both. Corbman's article highlights the beginning of disability activism during the feminist movement of the 1970s and 80s and how the intersecting identities enticed new members and activists from across the country to join the cause. Other disability centered feminist organizations that are part of the feminist archives include the Lesbian Illness Support Group and Gay and Lesbian Blind (GLB). Sara Ahmed elaborates the mental exclusiveness of privilege in "Atmospheric Walls", that there is an atmosphere that surrounds minority bodies which explains why an intersectionally privileged person could be made uncomfortable simply by being in the same room as a person of color, or in this case someone with a disability. Feminists and scholars also developed theories that put attention on the connection of gender and disability. Scholars like Thomas J. Gerschick argued that disability plays a big role on processing and experiencing gender, and people with disabilities often suffer stigmatization towards their gender, since their disabilities may make their body representation excluded by normative binary gender representation. Gerschick also argues that this stigmatization can affect the gendering process and self-representation of people with disabilities. Ellen Samuels explores gender, queer sexualities, and disability. Feminists also look into how people with disabilities are politically oppressed and powerless. Abby L. Wilkerson argues that people with disabilities are politically powerless because they are often desexualized, and the lack of sexual agency leads to the lack of political agency. Wilkerson also indicates that the erotophobia towards minority groups like people with disabilities further oppresses them, since it prevents these groups from gaining political power through sexual agency and power.

Gender and sexuality

See also: Sexuality and disability

At the intersection of disability, gender, and sexuality one finds crip theory. Crip theory exists as an interdisciplinary approach to critical disability theory. The term "crip theory" originates in Carrie Sandahl's article "Queering the Crip or Cripping the Queer?: Intersections of Queer and Crip Identities in Solo Autobiographical Performance". It was published in 2003 as part of a journal issue titled "Desiring Disability: Queer Theory Meets Disability Studies". Christopher Bell's Blackness and Disability; and the work of Robert McRuer both explore queerness and disability.

Since then many books and articles have been written on the topic. Each subsequent piece of scholarship dedicated to crip theory as a topic expands how crip theory is understood.

• 2006 Crip Theory: Cultural Signs of Queerness and Disability by Robert McRuer
• 2011 Feminist Disability Studies by Kim Q. Hall
• 2012 Sex and Disability by Robert McRuer, Anna Mollow
• 2013 Feminist, Queer, Crip by Alison Kafer
• 2018 Crip Times: Disability, Globalization, and Resistance by Robert McRuer
• 2018 Disability Studies and the Environmental Humanities: Toward an Eco-Crip Theory by Sarah Jaquette Ray, Jay Sibara, Stacy Alaimo
• 2019 The Matter of Disability: Materiality, Biopolitics, Crip Affect by David T. Mitchell, Susan Antebi, et al.

Most of the literature above is written by individual authors in the United States but there is nothing on there from other countries that depicts disability and sexuality in the same context. Myren-Svelstad, a Norwegian scholar compares two deviant novels in Norway's society, Nini Roll Anker's Enken [the Widow] written in 1932 and Magnhild Haalke's Allis sønn [Alli's Son] written in 1935. They both depict a queer man who is also disabled. The disability being depicted as someone whose mental capacity is significantly different than society's heteronormative view.

These communities on their own are topics of numerous deliberations; however, they also often link in significance in many ways. The significance of the movements began to build momentum and most legal recognition in the 1980s. It was only in 1973 that the American Psychiatric Association removed homosexuality from their list of mental disorders. In addition to this, it was about forty years later in 2013 that the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) changed the listing of transgender to "gender dysphoria".

One of the most notable circumstances where the case of these two minority rights come together was the court case In re Guardianship of Kowalski, in which an accident that occurred in 1983 left 36-year-old Sharon Kowalski physically disabled with severe brain injuries. The court granted guardianship of her to her homophobic parents who refused visitation rights to her long time partner, Karen Thompson. The court case lasted nearly ten years and was resolved by granting Thompson custody in 1991. This was a major victory in the realm of gay rights but also called to attention the validity of rights for those who identified under the queer and disabled spectrum. Numerous support groups emerged from necessity to create safe spaces for those identifying in these specific minority groups such as the founding of the Rainbow Alliance of the Deaf in 1977, the Lesbian Disabled Veterans of America group in 1996^{[citation needed]} which then became the Gay, Lesbian, Bisexual and Transgender Disabled Veterans of America, and the San Francisco Gay Amputees group in 2006.

A 2012 study showed that disability was more common in LGBTQ individuals when compared to heterosexual peers. It was also shown that the LGBTQ group with disabilities were noticeably younger in age than the heterosexual group. In a 2014 study of intersecting identities found that "disabled women whether gay, straight, bisexual or otherwise identifying have a harder time finding romantic relationships due to their socioeconomic status and ability. Drummond and Brotman introduce the idea that the lesbian disabled community face many barriers because of discrimination in the form of ableism, homophobia, racism and more due to intersecting identities and interests.

It is also a large topic of discussion to say that both groups have to undergo the same kind of "coming out" process in terms of their sexual identity, gender identity, and disability identity because of the lasting social stigma. "Coming out" through sexual identity, gender identity, and disability identity is one example of "Double Jeopardy", as they are part of more than one stigmatized group.

Eli Clare writes at the intersection of disability and transgender studies, namely as to how these disciplines can learn from each other. Similarly to how there is a 'coming out' for both transgender people and people with disabilities, there is a lack of bodily privacy both groups are faced with, primarily due to an over-medicalization of the body. Clare also works to make the distinction between bodily and medical truths, where one's diagnosis and medical treatment as a transgender or disabled person does not dictate their embodiment and how they navigate the world. Eventually, Clare reaches the idea of a disability politics of transness, which "delves into the lived experiences of our bodies, that questions the idea of normal and the notion of cure, that values self-determination, that resists shame and the medicalization of identity".

Queer studies, which emerged from women's studies, brings light towards the different kind of oppression queer and transgender people with disabilities have. Queer studies are commonly associated with people with disabilities who identify as "Crip" and is commonly believed that queer politics must incorporate crip politics. Alison Kafer describes a first-person experience of identifying queer and crip both reappropriated terms in Kafer's Feminist Queer Crip. Kafer describes the politics of the crip future and "an insistence on thinking these imagined futures – and hence, these lived presents - differently".

Although many activists with disabilities find empowerment in appropriating the term crip, not all people with disabilities feel comfortable using that identity. There are many different terms used as an alternative to disability, for example Melwood, a nonprofit who uses the term "differing abilities", describes the label disability as "a limitation in the ability to pursue an occupation because of a physical or mental impairment; a disqualification, restriction or disadvantage and a lack of legal qualification to do something, was an inadequate or limiting 'label' for a cross section of people". Because the term disability has a history of inferiority, it is believed by many that substituting the term will help eliminate the ableism that is embedded within it. Susan Wendell describes ableism in society "as a structure for people who have no weakness". This also applies to anyone who has any intersectional disadvantages. Feminism identifies these disadvantages and strategizes how to deconstruct the system that supports marginalizing specific groups of people.

Queer/disabled invisibility and negativity

An aspect of disability studies that is not often talked about is that of the perception of seeing disabled individuals as invisible. Also known as "queer/disabled invisibility". In disability studies the individuals who are disabled who make it into academic course work are usually the ones who struggle not only with being disabled and facing ableistic norms of society but they also have to contend with other identities such as being queer, a woman or a person of another race other than the master race of caucasian in America. Queer/disabled invisibility can also come up in forms of negative perceptions about the way a disabled individual is being raised. For instance, queer mothers raising a disabled child are often viewed as the cause of the child's disability. Another example of queer and disabled negativity is highlighted in the life experiences of Josie a young woman who does not identify as a particular gender living with a lifelong illness and disability. This young woman describes how she experienced sexism, ableism, homophobia and transphobia in a number of ways at her university, the queer community and medical providers because of her disability. The discrimination the women in these examples is part of the heteronormative, ableistic perspective in societies around the world today but are rarely discussed in the literature or during Disability Studies courses.

Political economy and social class

Within class comes multiple avenues for intersectionality through disability. Disability looks different from a middle class, upper class, and lower class perspective, as well as through race, gender, and ethnicity. One's social class can contribute to when a person becomes disabled, rather it be sooner or later. For example, where there is poverty we will find disability. This poverty can include social, economic, and cultural poverty. Having a disability can contribute to poverty just as poverty can contribute to having a disability. People with disabilities are more likely to live in poverty and be unemployed than those who do not, resulting in lower socioeconomic status. Some scholars have argued that disability, as it is understood today, is interlocked with class and capitalism. Intellectual disability, as it is understood today, is the product of the industrial revolution as workers unable to keep up with fast-paced factory work were pathologized.

Criticism

Questioning the social model

The International Association of Accessibility Professionals recognizes six different models for conceptualizing disability: social, medical, cultural affiliation, economic, charity, and functional solutions. Once universally accepted in the field, the social model of disability has recently been challenged. In a 2014 Disability Studies Quarterly article, students involved in campus disability groups note that they actively seek cures for their chronic illnesses and "question the rejection of the medical model" of disability. The cultural affiliation model accepts the person's disability completely and uses it a point of pride in being associated with other people in a similar condition. The economic model recognizes the effect of bodily limitations on a person's ability to work, and there may be a need for economic support or accommodations for the person's disability while the charity model regards people with disabilities as unfortunate and in need of assistance from the outside, with those providing charity viewed as benevolent contributors to a needy population. The functional solutions model of disability is a practical perspective that identifies the limitations (or "functional impairments") due to disability, with the intent to create and promote solutions to overcome those limitations. The primary task is to eliminate, or at least reduce, the impact of the functional limitations of the body through technological or methodological innovation. The pragmatism of the functional solution model deemphasizes the sociopolitical aspects of disability, and instead prioritizes inventiveness and entrepreneurship. This is the prevailing opinion behind compliance literature that promotes self-efficacy and self-advocacy skills for people with disabilities preparing for transition to independent living.

The social model has also been challenged for creating a false separation between disability and impairment as impairment, not just disability, is socially constructed. This critique draws on feminist arguments that the assertion that sex is biological but gender is social is a false dichotomy because sex is also socially constructed. This is not a rejection of physical reality but draws attention to the social value put on some values, needs and accommodations and the denigration of others.

Exclusion of cognitive and mental disabilities

There is discourse within disability studies to analyze the construction of mental illness. However, few post-structuralist disability scholars have focused their attention to impairments of the mind. According to Carol Thomas, a Reader in Sociology at the Institute for Health Research, Lancaster University, this may be because disability scholars have in the past considered only the barriers confronted by people with physical disabilities. The experience of impairment, cognitive disability, and mental illness had been absent from the discussion.

It is unclear exactly which perspective of disability scholarship "psychological impairment" can fall under, and this has led to a hesitation on the part of scholars. Scholars such as Peter Beresford (2002) suggest "the development of a 'social model of madness and distress'" which would consider impairments of the mind. Yet others may recommend the "embodied approach" to the study of mental illnesses.

With the emergence of Crip theory this hegemony is being challenged. In Feminist, Queer, Crip, Alison Kafer states "My goal is to contextualize, historically and politically, the meanings typically attributed to disability, thereby positioning "disability" as a set of practices and associations that can be critiqued, contested, and transformed." 

Notable disability studies theorists

• Peter Beresford
• Michael Bérubé
• James Charlton
• Lennard J. Davis
• Nirmala Erevelles
• Vic Finkelstein
• Rosemarie Garland-Thomson
• Johanna Hedva
• Laura Hershey
• Eva Kittay
• Simi Linton
• Mike Oliver
• Robert McRuer
• Tom Shakespeare
• Anne Waldschmidt
• Irving Zola
• Marta Russell

Chronic condition

From Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Chronic_condition

A chronic condition (also known as chronic disease or chronic illness) is a health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term "chronic" is often applied when the course of the disease lasts for more than three months. Common chronic diseases include diabetes, functional gastrointestinal disorder, eczema, arthritis, asthma, cancer, chronic obstructive pulmonary disease, Lyme disease, autoimmune diseases, genetic disorders and some viral diseases such as hepatitis C and acquired immunodeficiency syndrome. An illness which is lifelong because it ends in death is a terminal illness. It is possible and not unexpected for an illness to change in definition from terminal to chronic. Diabetes and HIV for example were once terminal yet are now considered chronic due to the availability of insulin for diabetics and daily drug treatment for individuals with HIV which allow these individuals to live while managing symptoms.

In medicine, chronic conditions are distinguished from those that are acute. An acute condition typically affects one portion of the body and responds to treatment. A chronic condition, on the other hand, usually affects multiple areas of the body, is not fully responsive to treatment, and persists for an extended period of time.

Chronic conditions may have periods of remission or relapse where the disease temporarily goes away, or subsequently reappears. Periods of remission and relapse are commonly discussed when referring to substance abuse disorders which some consider to fall under the category of chronic condition.

Chronic conditions are often associated with non-communicable diseases which are distinguished by their non-infectious causes. Some chronic conditions though, are caused by transmissible infections such as HIV/AIDS.

63% of all deaths worldwide are from chronic conditions. Chronic diseases constitute a major cause of mortality, and the World Health Organization (WHO) attributes 38 million deaths a year to non-communicable diseases. In the United States approximately 40% of adults have at least two chronic conditions. Living with two or more chronic conditions is referred to as multimorbidity.

Types

Chronic conditions have often been used to describe the various health related states of the human body such as syndromes, physical impairments, disabilities as well as diseases. Epidemiologists have found interest in chronic conditions due to the fact they contribute to disease, disability, and diminished physical and/or mental capacity.

For example, high blood pressure or hypertension is considered to be not only a chronic condition itself but also correlated to diseases such as heart attack or stroke. Additionally, some socioeconomic factors may be considered as a chronic condition as they lead to disability in daily life. An important one that public health officials in the social science setting have begun highlighting is chronic poverty.

Researchers, particularly those studying the United States, utilize the Chronic Condition Indicator (CCI) which maps ICD codes as "chronic" or non-chronic".

The list below includes these chronic conditions and diseases:

In 2015 the World Health Organization produced a report on non-communicable diseases, citing the four major types as:

• Cancers
• Cardiovascular diseases, including cerebrovascular disease, heart failure, and ischemic cardiopathy
• Chronic respiratory diseases, such as asthma and chronic obstructive pulmonary disease (COPD)
• Diabetes mellitus (type 1, type 2, pre-diabetes, gestational diabetes)

Other examples of chronic diseases and health conditions include:

• Alzheimer's disease
• Atrial fibrillation
• Attention deficit hyperactivity disorder
• Autoimmune diseases, such as ulcerative colitis, lupus erythematosus, Crohn's disease, coeliac disease, Hashimoto's thyroiditis, and relapsing polychondritis
• Blindness
• Cerebral palsy (all types)
• Chronic graft-versus-host disease
• Chronic hepatitis
• Chronic kidney disease
• Chronic osteoarticular diseases, such as osteoarthritis and rheumatoid arthritis
• Chronic pain syndromes, such as post-vasectomy pain syndrome and complex regional pain syndrome
• Dermatological conditions such as atopic dermatitis and psoriasis
• Deafness and hearing impairment
• Ehlers–Danlos syndrome (various types)
• Endometriosis
• Epilepsy
• Fetal alcohol spectrum disorder
• Fibromyalgia
• HIV/AIDS
• Hereditary spherocytosis
• Huntington's disease
• Hypertension
• Lyme Disease
• Mental illness
• Migraines
• Multiple sclerosis
• Myalgic encephalomyelitis (a.k.a. chronic fatigue syndrome)
• Narcolepsy
• Obesity
• Osteoporosis
• Parkinson's disease
• Periodontal disease
• Polycystic Ovarian Syndrome
• Postural orthostatic tachycardia syndrome
• Sickle cell anemia and other hemoglobin disorders
• Substance Abuse Disorders
• Sleep apnea
• Tick-borne illness
• Thyroid disease
• Tuberculosis
• And many more.

Risk factors

While risk factors vary with age and gender, most of the common chronic diseases in the US are caused by dietary, lifestyle and metabolic risk factors that are also responsible for the resulting mortality. Therefore, these conditions might be prevented by behavioral changes, such as quitting smoking, adopting a healthy diet, and increasing physical activity. Social determinants are important risk factors for chronic diseases. Social factors, e.g., socioeconomic status, education level, and race/ethnicity, are a major cause for the disparities observed in the care of chronic disease. Lack of access and delay in receiving care result in worse outcomes for patients from minorities and underserved populations. Those barriers to medical care complicate patients monitoring and continuity in treatment.

In the US, Minorities and low-income populations are less likely to access and receive preventive services necessary to detect conditions at an early stage.

The majority of US health care and economic costs associated with medical conditions are for the costs of chronic diseases and conditions and associated health risk behaviors. Eighty-four percent of all health care spending in 2006 was for the 50% of the population who have one or more chronic medical conditions (CDC, 2014).

There are several psychosocial risk and resistance factors among children with chronic illness and their family members. Adults with chronic illness were significantly more likely to report life dissatisfaction than those without chronic illness. Compared to their healthy peers, children with chronic illness have about a twofold increase in psychiatric disorders. Higher parental depression and other family stressors predicted more problems among patients. In addition, sibling problems along with the burden of illness on the family as a whole led to more psychological strain on the patients and their families.

Prevention

A growing body of evidence supports that prevention is effective in reducing the effect of chronic conditions; in particular, early detection results in less severe outcomes. Clinical preventive services include screening for the existence of the disease or predisposition to its development, counseling and immunizations against infectious agents. Despite their effectiveness, the utilization of preventive services is typically lower than for regular medical services. In contrast to their apparent cost in time and money, the benefits of preventive services are not directly perceived by patient because their effects are on the long term or might be greater for society as a whole than at the individual level.

Therefore, public health programs are important in educating the public, and promoting healthy lifestyles and awareness about chronic diseases. While those programs can benefit from funding at different levels (state, federal, private) their implementation is mostly in charge of local agencies and community-based organizations.

Studies have shown that public health programs are effective in reducing mortality rates associated to cardiovascular disease, diabetes and cancer, but the results are somewhat heterogeneous depending on the type of condition and the type of programs involved. For example, results from different approaches in cancer prevention and screening depended highly on the type of cancer. The rising number of patient with chronic diseases has renewed the interest in prevention and its potential role in helping control costs. In 2008, the Trust for America's Health produced a report that estimated investing $10 per person annually in community-based programs of proven effectiveness and promoting healthy lifestyle (increase in physical activity, healthier diet and preventing tobacco use) could save more than $16 billion annually within a period of just five years.

A 2017 review (updated in 2022) found that it is uncertain whether school-based policies on targeting risk factors on chronic diseases such as healthy eating policies, physical activity policies, and tobacco policies can improve student health behaviours or knowledge of staffs and students. The updated review in 2022 did determine a slight improvement in measures of obesity and physical activity as the use of improved strategies lead to increased implementation interventions but continued to call for additional research to address questions related to alcohol use and risk. Encouraging those with chronic conditions to continue with their outpatient (ambulatory) medical care and attend scheduled medical appointments may help improve outcomes and reduce medical costs due to missed appointments. Finding patient-centered alternatives to doctors or consultants scheduling medical appointments has been suggested as a means of improving the number of people with chronic conditions that miss medical appointments, however there is no strong evidence that these approaches make a difference.

Nursing

Nursing can play an important role in assisting patients with chronic diseases achieve longevity and experience wellness. Scholars point out that the current neoliberal era emphasizes self-care, in both affluent and low-income communities. This self-care focus extends to the nursing of patients with chronic diseases, replacing a more holistic role for nursing with an emphasis on patients managing their own health conditions. Critics note that this is challenging if not impossible for patients with chronic disease in low-income communities where health care systems, and economic and social structures do not fully support this practice.

A study in Ethiopia showcases a nursing-heavy approach to the management of chronic disease. Foregrounding the problem of distance from healthcare facility, the study recommends patients increase their request for care. It uses nurses and health officers to fill, in a cost-efficient way, the large unmet need for chronic disease treatment. They led their health centers manned by nurses and health officers; so, there are specific training required for involvement in the programmed must be carried out regularly, to ensure that new staff is educated in administering chronic disease care. The program shows that community-based care and education, primarily driven by nurses and health officers, works. It highlights the importance of nurses following up with individuals in the community, and allowing nurses flexibility in meeting their patients' needs and educating them for self-care in their homes.

Epidemiology

The epidemiology of chronic disease is diverse and the epidemiology of some chronic diseases can change in response to new treatments. In the treatment of HIV, the success of anti-retroviral therapies means that many patients will experience this infection as a chronic disease that for many will span several decades of their chronic life.

Some epidemiology of chronic disease can apply to multiple diagnosis. Obesity and body fat distribution for example contribute and are risk factors for many chronic diseases such as diabetes, heart, and kidney disease. Other epidemiological factors, such as social, socioeconomic, and environment do not have a straightforward cause and effect relationship with chronic disease diagnosis. While typically higher socioeconomic status is correlated with lower occurrence of chronic disease, it is not known is there is a direct cause and effect relationship between these two variables.

The epidemiology of communicable chronic diseases such as AIDS is also different from that of noncommunicable chronic disease. While Social factors do play a role in AIDS prevalence, only exposure is truly needed to contract this chronic disease. Communicable chronic diseases are also typically only treatable with medication intervention, rather than lifestyle change as some non-communicable chronic diseases can be treated.

United States

As of 2003, there are a few programs which aim to gain more knowledge on the epidemiology of chronic disease using data collection. The hope of these programs is to gather epidemiological data on various chronic diseases across the United States and demonstrate how this knowledge can be valuable in addressing chronic disease.

In the United States, as of 2004 nearly one in two Americans (133 million) has at least one chronic medical condition, with most subjects (58%) between the ages of 18 and 64. The number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. The most common chronic conditions are high blood pressure, arthritis, respiratory diseases like emphysema, and high cholesterol.

Based on data from 2014 Medical Expenditure Panel Survey (MEPS), about 60% of adult Americans were estimated to have one chronic illness, with about 40% having more than one; this rate appears to be mostly unchanged from 2008. MEPS data from 1998 showed 45% of adult Americans had at least one chronic illness, and 21% had more than one.

According to research by the CDC, chronic disease is also especially a concern in the elderly population in America. Chronic diseases like stroke, heart disease, and cancer were among the leading causes of death among Americans aged 65 or older in 2002, accounting for 61% of all deaths among this subset of the population. It is estimated that at least 80% of older Americans are currently living with some form of a chronic condition, with 50% of this population having two or more chronic conditions. The two most common chronic conditions in the elderly are high blood pressure and arthritis, with diabetes, coronary heart disease, and cancer also being reported among the elder population.

In examining the statistics of chronic disease among the living elderly, it is also important to make note of the statistics pertaining to fatalities as a result of chronic disease. Heart disease is the leading cause of death from chronic disease for adults older than 65, followed by cancer, stroke, diabetes, chronic lower respiratory diseases, influenza and pneumonia, and, finally, Alzheimer's disease. Though the rates of chronic disease differ by race for those living with chronic illness, the statistics for leading causes of death among elderly are nearly identical across racial/ethnic groups.

Chronic illnesses cause about 70% of deaths in the US and in 2002 chronic conditions (heart disease, cancers, stroke, chronic respiratory diseases, diabetes, Alzheimer's disease, mental illness and kidney diseases) were 6 of the top ten causes of mortality in the general US population.

Economic impact

United States

Chronic diseases are a major factor in the continuous growth of medical care spending. In 2002, the U.S. Department of Health and Human Services stated that the health care for chronic diseases cost the most among all health problems in the U.S. Healthy People 2010 reported that more than 75% of the $2 trillion spent annually in U.S. medical care are due to chronic conditions; spending are even higher in proportion for Medicare beneficiaries (aged 65 years and older). Furthermore, in 2017 it was estimated that 90% of the $3.3 billion spent on healthcare in the United States was due to the treatment of chronic diseases and conditions. Spending growth is driven in part by the greater prevalence of chronic illnesses and the longer life expectancy of the population. Also, improvement in treatments has significantly extended the lifespans of patients with chronic diseases but results in additional costs over long period of time. A striking success is the development of combined antiviral therapies that led to remarkable improvement in survival rates and quality of life of HIV-infected patients.

In addition to direct costs in health care, chronic diseases are a significant burden to the economy, through limitations in daily activities, loss in productivity and loss of days of work. A particular concern is the rising rates of overweight and obesity in all segments of the U.S. population. Obesity itself is a medical condition and not a disease, but it constitutes a major risk factor for developing chronic illnesses, such as diabetes, stroke, cardiovascular disease and cancers. Obesity results in significant health care spending and indirect costs, as illustrated by a recent study from the Texas comptroller reporting that obesity alone cost Texas businesses an extra $9.5 billion in 2009, including more than $4 billion for health care, $5 billion for lost productivity and absenteeism, and $321 million for disability.

Social and personal impact

There have been recent links between social factors and prevalence as well as outcome of chronic conditions.

Mental health

Specifically, the connection between loneliness and health and chronic condition has recently been highlighted. Some studies have shown that loneliness has detrimental health effects similar to that of smoking and obesity. One study found that feelings of isolation are associated with higher self reporting of health as poor, and feelings of loneliness increased the likelihood of mental health disorders in individuals. The connection between chronic illness and loneliness is established, yet oftentimes ignored in treatment. One study for example found that a greater number of chronic illnesses per individual were associated with feelings of loneliness. Some of the possible reasons for this listed are an inability to maintain independence as well as the chronic illness being a source of stress for the individual. A study of loneliness in adults over age 65 found that low levels of loneliness as well as high levels of familial support were associated with better outcomes of multiple chronic conditions such as hypertension and diabetes. There are some recent movements in the medical sphere to address these connections when treating patients with chronic illness. The biopsychosocial approach for example, developed in 2006 focuses on patients "patient's personality, family, culture, and health dynamics." Physicians are leaning more towards a psychosocial approach to chronic illness to aid the increasing number of individuals diagnosed with these conditions. Despite this movement, there is still criticism that chronic conditions are not being treated appropriately, and there is not enough emphasis on the behavioral aspects of chronic conditions or psychological types of support for patients.

The mental toll of chronic illness is often underestimated in society. Adults with chronic illness that restrict their daily life present with more depression and lower self-esteem than healthy adults and adults with non-restricting chronic illness. The emotional influence of chronic illness also has an effect on the intellectual and educational development of the individual. For example, people living with type 1 diabetes endure a lifetime of monotonous and rigorous health care management usually involving daily blood glucose monitoring, insulin injections, and constant self-care. This type of constant attention that is required by type 1 diabetes and other chronic illness can result in psychological maladjustment. There have been several theories, namely one called diabetes resilience theory, that posit that protective processes buffer the impact of risk factors on the individual's development and functioning.

Financial cost

People with chronic conditions pay more out-of-pocket; a study of the United States found that people spent $2,243 more on average. The financial burden can increase medication non-adherence.

In some countries, laws protect patients with chronic conditions from excessive financial responsibility; for example, as of 2008 France limited copayments for those with chronic conditions, and Germany limits cost sharing to 1% of income versus 2% for the general public.

Within the medical-industrial complex, chronic illnesses can impact the relationship between pharmaceutical companies and people with chronic conditions. Life-saving drugs, or life-extending drugs, can be inflated for a profit. There is little regulation on the cost of chronic illness drugs, which suggests that abusing the lack of a drug cap can create a large market for drug revenue. Likewise, certain chronic conditions can last throughout one's lifetime and create pathways for pharmaceutical companies to take advantage of this.

Gender

Gender influences how chronic disease is viewed and treated in society. Women's chronic health issues are often considered to be most worthy of treatment or most severe when the chronic condition interferes with a woman's fertility. Historically, there is less of a focus on a woman's chronic conditions when it interferes with other aspects of her life or well-being. Many women report feeling less than or even "half of a woman" due to the pressures that society puts on the importance of fertility and health when it comes to typically feminine ideals. These kinds of social barriers interfere with women's ability to perform various other activities in life and fully work toward their aspirations.

Socioeconomic class and race

Race is also allegedly implicated in chronic illness, although there may be many other factors involved. Racial minorities are 1.5-2 times more likely to have most chronic diseases than white individuals. Non-Hispanic blacks are 40% more likely to have high blood pressure that non-Hispanic whites, diagnosed diabetes is 77% higher among non-Hispanic blacks, and American Indians and Alaska Natives are 60% more likely to be obese than non-Hispanic whites. Some of this prevalence has been suggested to be in part from environmental racism. Flint, Michigan, for example, had high levels of lead poisoning in their drinkable water after waste was dumped into low-value housing areas. There are also higher rates of asthma in children who live in lower income areas due to an abundance of pollutants being released on a much larger scale in these areas.

Advocacy and research organizations

In Europe, the European Chronic Disease Alliance was formed in 2011, which represents over 100,000 healthcare workers.

In the United States, there are a number of nonprofits focused on chronic conditions, including entities focused on specific diseases such as the American Diabetes Association, Alzheimer's Association, or Crohn's and Colitis Foundation. There are also broader groups focused on advocacy or research into chronic illness in general, such as The National Association of Chronic Disease Directors, Partnership to FIght Chronic Disease, the Chronic Disease Coalition which arose in Oregon in 2015, and the Chronic Policy Care Alliance.

Narratives

• Final Negotiations: A Story of Love, Loss, and Chronic Illness by Carolyn Ellis
• Beyond Words: Illness and the Limits of Expression by Kathlyn Conway
• Ordinary Life: A Memoir of Illness by Kathlyn Conway
• The Wounded Storyteller: Body, Illness, and Ethics by Arthur W. Frank
• Tender Points by Amy Berkowitz
• Illness as Metaphor by Susan Sontag
• Regarding the Pain of Others by Susan Sontag
• Bodies in Protest: Environmental Illness and the Struggle Over Medical Knowledge by Steve Kroll-Smith and H. Hugh Floyd
• Inside Chronic Pain: An Intimate and Critical Account by Louis Heshusius and Scott M. Fishman
• The Nearness of Others: Searching for Tact and Contact in the Age of HIV by David Caron
• Narrative Medicine: Honoring the Stories of Illness by Rita Charon
• Good Days, Bad Days: The Self in Chronic Illness and Time by Kathy Charmaz