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National Limb Loss Information Center / Amputee Coalition Fact Sheets

National Limb Loss Information Center /
Amputee Coalition Fact Sheets

These original NLLIC Fact Sheets can quickly answer your questions about limb loss statistics, available resources and other important topics such as surgery, pain, advocacy and peer support. 

Each concise and informative Fact Sheet is based on the information requests most frequently received by the NLLIC. New Fact Sheets are added every year and resources are updated often. Be assured that trustworthy and accurate information is our goal. To ensure this, medical Fact Sheets are reviewed by experts on the Amputee Coalition Medical Advisory Committee. 

If you don’t find the information that you looking for, or have further questions, please contact the NLLIC or search the library. 

 

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Information for New Amputees (also see Preparing for Surgery)

Limb Loss Definitions. An extensive listing of terms relating to limb differences and their meanings.  Also available in Spanish

Locating a Certified Prosthetist. Lists several online directories of certified prosthetists. Also available in Spanish

Locating a Physical Therapist or Physiatrist. Use this list of online search engines to find physical therapists and physiatrists near you. You can then contact these professionals to ask about their experience and specialties.

Pain Management and the Amputee by Partners Against Pain and the NLLIC. This fact sheet provides important practical information that you can use to get help managing your pain. In many instances, pain will decrease over time. Other times it may be necessary to take aggressive steps to control pain. This fact sheet provides information about handling a range of outcomes.. Also available in Spanish, Easy Read and Spanish Easy Read

Prosthetics FAQ's for the New Amputee. You've had an amputation, your residual limb is healing and it's time to start thinking about prostheses. This fact sheet has some answers to questions that new amputees frequently ask. Also available in Spanish

Steps to Effective Advocacy. These are steps the Amputee Coalition recommends for effective patient advocacy, whether acting on your own behalf or in the interest of a friend or family member. Also available in Spanish

Upper Limb Loss: Questions to Ask Your Prosthetist. The Amputee Coalition of America’s Upper Limb Loss Advisory Council suggests these questions to help people evaluate a prosthetist’s experience and comfort level with upper-limb prostheses. However, these questions are also relevant for any amputee in the process of choosing a prosthetist

What Is the Amputee Coalition and What Can We Do for You?  Whether you are facing amputation for the first time, a new amputee, or have lived with limb loss/limb difference for years, the Amputee Coalition can provide a wealth of information and services to address any needs you may have.

Wound Care: Preventing Infection. Any wound from amputation or other surgery, is at risk of becoming infected. The risk is due to the skin opening, which can allow germs or dirt to enter the bloodstream. Infections can cause pain, fever, redness, swelling and tenderness. They can lead to further surgery or death if not treated properly. This fact sheet looks at how to take care of the residual limb after surgery. Also available in Spanish, Easy Read and Spanish Easy Read

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Children

Peer Support for Children and Parents. This fact sheet discusses peer visitation and resources for parents and children. Peers can help new amputees adjust to a new life by sharing information, offering emotional and practical support and serving as models of success. Peer support is especially helpful to young people. Also available in Spanish

Resources to Help Children Understand Limb Loss. Reading books about limb difference is a safe and familiar way to introduce children to the topic. This Fact Sheet summarizes a variety of story books, printable coloring pages and other resources that address limb loss. Books feature children, adults and animals with amputations. Learning curriculum and articles for adults are also included.

Summer Camps for Children with Physical Disabilities. The fact sheet includes a list of camps around the country that provide summer retreats for children with physical disabilities. Also available in Spanish

When a Parent Loses a Limb: Helping Children Cope. This fact sheet includes common questions that children ask when a parent has an amputation. Also included are several points of discussion to promote communication between parent and child. Also available in Spanish, Easy Read and Spanish Easy Read

U.S. Dept. of Education Tips for Promoting Physical Activity in Children with Disabilities. The U.S. Department of Education recommends these tips for promoting the inclusion of children with physical disabilities in physical education classes and after-school athletic programs.

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Financial Help / Funding

Financial Assistance for Prostheses and Other Assistive Devices. This fact sheet contains information about organizations that provide assistance to individuals who are otherwise unable to afford prosthetic care. Each organization has its own methods of providing services and requirements for eligibility.Also available in Spanish

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Advocacy

Do's and Don'ts of a Legislative Visit. Tips for giving successful presentations and holding productive meetings with lawmakers when advocating for legislative change.
Also available in Spanish, Easy Read and Spanish Easy Read

How Go I Get Help From My Congressional Representatives? Ideas for seeking help from congressional representatives. Also available in Easy Read and Spanish Easy Read

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Peer Support

Online Communication Resources for Those with Limb Loss. Resources for amputees or family members of amputees who would like to communicate with other amputees via Internet bulletin boards or e-mail lists. Also available in Spanish

Online Support Resources for People With Diabetes. Online support groups and forums for people with diabetes who wish to communicate with others sharing similar experiences.

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Other

Locating a Lawyer. Use this list of online search engines to find lawyers near you who deal with Social Security Disability or similar issues. After locating a lawyer in your area, please contact the professional to ask about his/her experience and specialties.

Locating an Orthopaedic Surgeon. Use this list of online search engines to find an orthopaedic surgeon near you. You can then contact these professionals to ask about their experience and specialties.

Mismatched and Single Shoes. Resources for those who need a single shoe or shoes of different sizes. Also available in Spanish

Paratransit Services. Paratransit is a specialized, door-to-door transport service for people with disabilities who are not able to ride fixed-route public transportation. This fact sheet looks at eligibility for this service, costs and ways to locate services.

Resources for Seniors with Limb Differences and Their Caregivers. Contact information for a variety of service organization on aging, medical and prescription drugs, caregivers and seniors with disabilities. Also available in Spanish

Survival Guide for Caregivers: De-Stressing to Stay Healthy. Studies show that caregivers are less likely to take care proper of themselves. This fact sheet suggests habits and activities for caregivers to stay healthy and de-stress. Also available in Easy Read

What Is the Amputee Coalition, and What Can We Do for You? An overview of Amputee Coalition’s programs, services, and how to contact us for information.

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Preparing for Surgery (also see Information for New Amputees)

Before Your Amputation: Questions to Ask Your Surgeon. Talking with your surgeon prior to amputation is important. You should meet your surgeon, feel confident in his/her abilities, and have all your concerns addressed before surgery is scheduled. Listed on this fact sheet are some critical questions. You may want answers to all of them or you might choose those which are most important to you. Your surgeon should be willing to take the time to answer any questions you have. Also available in Spanish, Easy Read and Spanish Easy Read

Points to Know and Consider When Preparing for and Undergoing an Amputation. This fact sheet provides some points to know about and consider when an amputation becomes necessary. These include aspects of presurgery, postsurgery, prosthetic fitting, physical therapy with the prosthesis and emotional needs. Also available in  Spanish and Easy Read

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Prosthetics

Foreshortened Prostheses (Stubbies). Stubbies are foreshortened prostheses used during and sometimes after initial ambulatory rehabilitation. This fact sheet describes what stubbies are, how they are designed, and who can benefit from them. Also available in Spanish, Easy Read and Spanish Easy Read

Global O&P Resources for Amputees. This is a source of international resources for amputees who are outside of the United States, including a list of healthcare resources divided into national and regional organizations. This is an excellent starting point for any amputee abroad who is seeking assistance. Also available in Spanish

Prosthetic Limb Donations. Prosthetic components are generally not reused in the United States because of legal considerations. However, used prosthetic limbs may be disassembled and the components shipped to developing nations for use by landmine victims and other individuals in need. This is a list of organizations that take donations.
Also available in Spanish

When to Replace a Prosthesis. Guidelines for helping to determine when prosthetic limb replacement is necessary. Also available in Spanish and Easy Read

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