Resources – Education & Studies

Books & Articles

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Books and Articles for Patients

• Anatomy of an Illness
  A bestseller about overcoming illness and the triumph of the human spirit by Norman Cousins.
• Career and Employment Resources for People with Disabilities
  This resource is written to help those with disabilities find a job that works for them.
• Career Guide for People with Disabilities
  This article provides individuals with disabilities information about the pathway to employment.
• Caring for Those in Chronic Pain: How Spouses Cope
  For those who provide full-time care for someone in a fragile condition, it’s important to take care of not only the ailing loved one, but themselves as well. Lynn and Seth’s story is an inspirational example of this balance.
• Chronic Inspiration
  A compilation of 64 blogs written by 28 bloggers that are inspirational and heartfelt perspectives from the frontlines of chronic illness.
• Chronic Pain: What It Is and How Proper Testing Helps
  This resources explains what chronic pain is, what causes it, and how it is diagnosed and managed.
• Compare The Best Medical Alert Systems of 2019
  This article by Senior Safety Reviews explains the criteria for determining the best medical alert systems.
• Drug-Free Remedies for Chronic Pain
  This reference sheet from the American Association of Retired Persons lists some natural ways of relieving pain.
• How to Make Flying with Physical Disabilities Less Stressful: A Fully Accessible Guide
  This guide provides accessibility information for the top 15 U.S airports and the types of services provided for physically disabled travelers.
• Let's Talk About Crohn's Disease
  This article provides causes, symptoms, treatments, and other facts and tips that can make life with Crohn's easier.
• Managing Chronic Pain: How Psychologists Can Help with Pain Management
  This article sheds light on how speaking to a professional may have a positive impact on overall health.
• Medication Management for People with Disabilities
  This guide is designed to provide individuals with information about medication management, storage, label reading and more.
• The Complete Guide to Home Loans for People with Disabilities
  This guide is intended to provide all the information needed to secure a home loan while living with a disability.
• The Confused Consumer's Guide to Choosing a Health Care Plan: Everything You Need to Know
  How to navigate the confusing maze of choosing a healthcare plan.
• THE EMPOWERED PATIENT
  How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time, by Elizabeth S. Cohen
• The Full Guide to Flying with a Disability
  This guide is a one-stop-shop for accessible travel advice for people with disabilities.
• The Healthcare Handbook: How to Avoid Medical Errors, Find the Best Doctors, Be Your Own Patient Advocate & Get the Most from Healthcare
  A UCLA professor emeritus with 35 years of experience evaluating patient care discusses why medical errors happen and how to prevent them.
• The Highly Sensitive Person's Survival Guide to Home Setup
  This guide can help to create a home environment that acts as a restful sanctuary.
• The Immune System Recovery Plan: A Doctor's 4-Step Program to Treat Autoimmune Disease
  A four-step program to help reverse autoimmune disease symptoms, heal immune systems and prevent future illness.
• The Patient’s Checklist: 10 Simple Hospital Checklists to Keep You Safe, Sane & Organized
  Guidance to healthcare consumers and family members on how to go about the process of ensuring they are getting the best and safest hospital care possible.
• The Science of Sleep: How Healthy Sleeping Habits Can Reduce Chronic Pain
  New research shows that a full night's sleep can be effective in reducing chronic pain.
• The Ultimate Guide to Finding and Renting Housing with Disabilities
  This guide outlines disabled individuals' legal rights to finding and renting living accommodations, as well as government agencies and national organizations that can provide help.
• The Ultimate Guide to Home Accommodations for Persons with Disabilities
  For those whose chronic pain stemming from a physical disability, there are several ways to make the home a safer, more comfortable place to live.
• Traveling Abroad with a Disability
  This guide provides information on planning a trip with a disability and how to enjoy the world hassle-free.
• Ultimate Guide to Home Remodeling for People with Disabilities
  This guide will show people how to remodel their home to accommodate their or a loved one's disability with tips on funding and design options for every room.
• YOU the Smart Patient: An Insider's Handbook for Getting the Best Treatment
  A guide to tackling healthcare decisions such as picking the best doctors and hospitals, knowing when to get a second opinion and more.
• Your Doctors’ Manners Matter: Better Health Through Civility in the Doctor’s Office and in the Hospital
  How to identify physicians and other medical professionals who practice medicine in a way that exhibits compassion, empathy and respect for the dignity of their patients.

Books and Articles for Caregivers

• Strategies for Long-Distance Caregivers
  This resource discusses the unique challenges long-distance caregivers face, and how a relationship with a healthcare team can help overcome these challenges.
• When You're Ill or Incapacitated
  Comprises one-half the booklet it shares with When You're the Caregiver, suggesting 12 things to remember or do in each role.

Books and Articles for Parents

• A Parent's Guide to Special Education
  Insider advice on how to navigate the system and help your child succeed.
• The Everyday Guide to Special Education Law
  How parents so they can be more effective advocates for their children.

Books and Articles for Children

• Germs Make Me Sick
  Explains with colorful illustrations how the body fights germs.
• Little Tree: A Story for Children With Serious Medical Illness
  A comforting fable for young children facing serious life challenges.
• Our Immune System
  Enables children who are immune deficient and their families to explore together the immune system.

Books and Articles for Specific Diseases

• 21st Century Complete Medical Guide to Primary Immune Deficiency, Severe Combined Immunodeficiency (SCID), Chronic Granulomatous Disease (CGD), for Patients and Physicians
  Federal government clinical data and practical information for patients and physicians.
• A Handbook for Care Givers
  By Helen Rummelsburg (gives an account of caring for her husband and offers helpful hints for patients and caregivers).
• A Parent's Guide to Special Education
  Insider advice on how to navigate the system and help your child succeed..
• An overview of the immune system and primary immunodeficiency diseases to provide a basic description of the components of the immune system and how its defects lead to disease
  By Dr. Norman Latov, MD, PhD (provides practical information on all the neuropathies, causes and treatments).
• Anatomy of an Illness
  By Norman Cousins (a bestseller about overcoming illness and the triumph of the human spirit. The premise is that the human mind is capable of promoting the body's capacity for combating illness and healing itself even when faced with a seemingly hopeless medical predicament).
• Bed Number Ten
  A view of long-term care through the eyes of a patient totally paralyzed with Guillain Barre syndrome.
• Caring for a Child with GBS
  A short guide written by a mother of a child with chronic inflammatory demyelinating polyneuropathy.
• If You're Having a Crummy Day, Brush Off the Crumbs!
  More than 75 ways to help people get through the days when neuropathy (or other ailments) is particularly difficult.
• Inclusion-Body Myositis and Myopathies
  A discussion of the two forms of inclusion-body myositis.
• Living Creatively with Chronic Illness
  Developing Skills for Transcending the Loss, Pain and Frustration, by Eugenia G. Wheeler (a self-help book specifically designed to help the chronically ill, their families, friends, counselors, medical personnel and the clergy).
• Managing Pain Before It Manages You
  By Dr. Margaret A. Caudill (a wellspring of wisdom and practical approaches that can help transform your life and your pain).
• Medifocus Guide to Peripheral Neuropathy
  A guide to current and relevant peripheral neuropathy research.
• Multiple Sclerosis Awareness: How You Can Make a Difference
  This guide presents strategies for raising awareness about this disease.
• Myositis – A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References
  A three-in-one reference book, including a dictionary of terms relating to myositis, a list of bibliographic citations about the disorder and a guide to Internet resources.
• Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Providers
  A resource for families of children with myositis and their healthcare teams.
• No Laughing Matter
  By Joseph Heller and Speed Vogel (the best-selling author of Catch-22 teamed up with his best friend to describe Heller's battle with and triumph over GBS).
• Numb Toes and Aching Soles
  The symptoms, causes, tests, treatments and coping strategies for peripheral neuropathy.
• Numb Toes and Other Woes
  The second in a series of three books focusing on clinical findings and treatment strategies for peripheral neuropathy.
• Nutrients for Neuropathy
  The third in the Numb Toes series focusing exclusively on nutrient supplementation as a means for managing peripheral neuropathy.
• The Confused Consumer's Guide to Choosing a Health Care Plan: Everything You Need to Know
  By Martin Gottlieb (helps consumers through the confusing maze of choosing a healthcare plan).
• The Everyday Guide to Special Education Law
  How parents so they can be more effective advocates for their children.
• The Official Patient's Sourcebook on Inclusion Body Myositis
  A reference manual for self-directed patient research.
• The Patient's Checklist: 10 Simple Hospital Checklists to Keep You Safe, Sane & Organized
  Guidance to healthcare consumers and family members on how to go about the process of ensuring they are getting the best and safest hospital care possible.
• Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop
  Practical information on all the neuropathies, causes and treatments.
• Pride and the Daily Marathon
  The story of a man struck down at work by a rare neurological illness that deprived him of all sensation below the neck, and how he reclaimed a life of full mobility.
• You CAN Cope With Peripheral Neuropathy: 365 Tips for Living a Full Life
  Helpful hints and personal histories by people with peripheral neuropathy.