Resources

The following resources are taken from Life on Wheels: For the Active Wheelchair User, by Gary Karp, copyright 1999, published by O’Reilly & Associates, Inc. To order, or get more information about Gary’s book, call 1-800-998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Wheels

This Center has been created for wheelchair users who want to take charge of their life experience.

 

This Month’s Articles
Archived Articles ]

Public Attitude Toward Disability.There’s no way to avoid having public attitudes impact you. Here is a discussion of some of the issues.

The Experience of Disability: Change of Identity. Cultural views of disability color your sense of self and a sudden disability can foster a far-reaching self-evaluation.

Home Access: Entrance and Doors.Access begins with the door (and its width, approach, ramp, lift, hardware, and type).

Exercise. Chair users, especially, need exercise, both strength-building and aerobic. Exercise programs might include working out at a health club, using a standing frame, and sports, as well as manual wheeling and other daily activities.

Clinical Trial Ethics

Many people are reluctant to participate in clinical trials because they feel a sense of distaste for the idea of being experimented on, for being treated as if they were human guinea pigs. You’ve probably heard about the horrific medical experiments that were conducted on unwilling participants in Nazi concentration camps during World War II.1 You may also have heard about the shameful Tuskegee experiment, in which 400 African-American men with syphilis were left untreated for decades–even after a cure for syphilis became available–so that scientists could study the natural course of the disease.2 Those historical incidents along with several others–not to mention uncounted numbers of mad-scientist movies–have made many people wary of participating in clinical trials.

Fortunately it’s extremely rare these days for research subjects to be treated badly. Those past abuses have led to the development of strict ethical codes for the conduct of clinical trials. Since the mid-1960s participants in clinical trials have been the beneficiaries of strong ethical, legal, and procedural protections.

Cancer clinical trial

This information center has been created especially for people with cancer, and their families, who are interested in finding out about clinical trials.

 

This Month’s Articles
Archived Articles ]

Cancer clinical trial search interface.Patient-Centered Guides is partnering with HopeLink to provide a searchable database of cancer clinical trials. The full press release is on our Press page.

Phase III Clinical Trials. Phase III clinical trials are used to find out whether a new treatment improves on existing standard treatments. Knowing about the distinct advantages and disadvantages of Phase III trials will help you decide whether to pursue standard treatment or one of these investigational treatments.

The New Targeted Biological Therapies. There are promising new treatments for breast cancer and other cancers, including therapies currently available only in clinical trials. The article is derived from Musa Mayer’s book Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, © 2001 by Musa Mayer.

The Patient’s Respo

Technical Reading

Newly published medical textbooks are typically two to three years behind the latest medical information and research findings. More than 3,000 medical journals, written by and for doctors and scientists, present the most recent discoveries. More and more people are getting involved in researching their own conditions and becoming more active in healthcare decision-making.

While there are numerous reasons for fully understanding your risks for late effects, there are also very good reasons why you might want to restrict your research to particular areas, get a friend or family member to help, or not research at all. Chapter 13, “Researching the Medical Literature,” in Nancy Keene’s book Working with Your Doctor outlines the pros and cons of researching. It also explains how to conduct a basic search, find experts in specific medical conditions, and use a medical library.

The following journal article citations are but a few of the thousands available on the late effects of childhood cancer. You can get the full text of these articles from your nearest medical school library, hospital library, or through interlibrary loan at your public library.

Survivors

Patient-Centered Guides founding editor Nancy Keene is maintaining the four books O’Reilly published on childhood cancer through Childhood Cancer Guides, a nonprofit organization she and Catherine Woodman, M.D., created to serve the childhood cancer community by providing information, emotional support, and advocacy. You can purchase Childhood Cancer Guides through O’Reilly or at your favorite bookstore. For more information contact info@childhoodcancerguides.org or visit their web site at childhoodcancerguides.org.

 

News and Articles
Archived Articles ]2003’s list of Follow-Up Clinics for Childhood Cancer Survivors has been published.

Nancy Keene interview on childhood cancer. Author-advocate Nancy Keene answers questions on treatment advances, research directions, parent activism, issues for survivors, and more.

study on survivorship published in JAMA shows that childhood cancer survivors do not have good information about their own medical history. It is impossible to get good follow-up care without this crucial information.

The Stigma of Lung Cancer

Written by Karen Parles, librarian and lung-cancer activist

“Prior to my lung cancer diagnosis, I was an art librarian at the Frick Collection. After treatment, I took classes (medical librarianship, evidence-based medicine, advanced Medline searching) and transformed myself into a medical librarian.

“Following my lung cancer diagnosis, I was appalled to discover the dearth of information available for lung cancer patients. As a research librarian, my instinct was to learn as much as possible about my disease, but the lack of patient information made this task difficult. After completing my treatment, I decided to create a websitewww.lungcanceronline.org. devoted solely to supporting the information needs of lung cancer patients and their families.

“While my ongoing work with other patients has been extremely rewarding, what I have learned about the politics, economics and realities of lung cancer has sickened me. Treatment and support services for lung cancer lag behind those of other major cancers due to the smoking stigma associated with this disease. A constant reminder of this is the inevitable question people ask me when they learn I have lung cancer,

Pervasive Developmental Disorders Diagnoses Soar 1,975% since 1987

What are Pervasive Developmental Disorders (PDDs)?

PDDs are a range of neurological conditions that adversely affect a person’s speech and communication, emotional growth, socialization, and physical capabilities. PDDs range from Asperger’s syndrome (at the less severe end) to autism. In the middle of this spectrum are the most frequently diagnosed PDDs: PDD-NOS (not otherwise specified) and Atypical PDD. Children with these diagnoses meet some, but not all, of the criteria for autism.

What causes PDDs?

Bad parenting used to be blamed, but all of the pervasive developmental disorders are rooted in a complex combination of genetics, individual brain wiring, and environmental factors. Some researchers suspect viruses, vaccines, pollution or metabolic problems in the increasing number of cases.

“It’s been three months since the diagnosis. I don’t know if my boy is going to be okay, I don’t know if I’m going to be okay, I don’t know if this marriage is going to be okay. Some days I keep wishing this was a dream. And then I wake up, and it’s so not-normal, and there’s nobody among our old friends or at work who I can talk to about it.” Peter, father of three-year-old Morgan, diagnosed with PDD-NOS

Patient-Centered Guides Partners with HopeLink for Cancer Clinical Trial Searches

SEBASTOPOL, CA — How are cancer cures developed? A step at a time, as a progression of clinical trials incrementally shows which treatment variation is better.

Enrollment in clinical trials is necessary if steady progress is to be made. In childhood cancers, enrollment in clinical trials is 60%. Because of the high percentage of families participating, the cure rate for childhood cancer has jumped from a meager 10% in 1970 to today’s overall survival rate of almost 70%. By contrast, adult cancers typically have only 3% of patients enrolled in trials. Trials which take years to fill mean that treatment advances are slow and expensive.

For high-risk cancers, clinical trials offer possible access to promising new treatments. Many promising biological treatments, such as Gleevec and Iressa, are currently being tested on a range of cancers.

Follow-up Clinics

SEBASTOPOL, CA – This year’s list of aftercare centers for childhood cancer survivors in the United States has been named by a group of parents of survivors, including Nancy Keene, well-known patient advocate and author of books that help families of children with cancer.

“The powerful drugs and radiation used to cure children affect developing minds and growing bodies,” said Keene, co-author of Childhood Cancer Survivors: A Practical Guide to Your Future. “250,000 survivors of childhood cancer live in the U.S. and unfortunately, they often do not get comprehensive follow up to help them make the most of the lives they fought to win.”

After years of personally answering hundreds of phone calls and emails from desperate survivors searching for doctors who understood their unique needs, Keene created this list of programs for childhood cancer survivors. Again this year, she surveyed over 100 major children’s hospitals across the nation to find out which ones currently provided comprehensive services to children, teens, and adults who are survivors of childhood cancer.