By Ana-Maria Gutierrez
People living with hip disarticulation or hemipelvectomy amputation represent a small percentage of the total amputee population. In the United States, approximately 133,000 lower limb amputation procedures are performed yearly. Of these, approximately 0.5% have experienced a hemipelvectomy and 1.0% have experienced a hip disarticulation amputation. People who have these amputations often face much greater challenges.
Overcoming the loss of three weight-bearing joints can be extremely complicated and incredibly daunting for the patient. And because this population is so small, finding accurate, up-to-date information, resources, and peer support can be challenging.
The Amputee Coalition has developed the new Hip Disarticulation/Hemipelvectomy Amputation: Beginning Your New Journey guide for people born with limb difference, or have undergone these surgeries, and the parent, friend, or family member of a loved one with a hemipelvectomy or hip disarticulation. After a hip disarticulation or hemipelvectomy amputation, many uncertainties arise. What does life look like after this? How will I regain mobility and independence?
How do prosthetic devices work for me? Will I be able to have a romantic relationship or have children? Or, if you are a parent, how will my child learn how to walk and play? The guide provides answers to important questions and offers resources as you begin this journey.
While adjusting to your new life can be a challenge, it is possible to thrive in every aspect of life – school, career, retirement, family, community, work relationships, and personal lives. Peer and family support, skilled healthcare professionals, other supports and services, and personal advocacy are all key ingredients for success. The Amputee Coalition’s new resource serves as a guide through all stages of your journey.
Learn about the recovery process after surgery, how to engage with your healthcare team, and what to expect in the first three months to a year. We share information about your role in the rehabilitation process to help get you up and moving, restore strength and endurance, and support you through the rehabilitation process. The guide helps you set expectations for common issues that you may encounter and provides helpful tips to avoid these issues as you navigate your daily activities. It also addresses secondary conditions and emotional support resources.
Advocating for your personal healthcare needs with your medical team and insurance companies is key. We want to ensure that you are informed and prepared before you select your prosthetist by offering a checklist of questions to consider in the selection process. We understand that you may face challenges in dealing with insurance providers.
The National Limb Loss Resource Center® can offer assistance and guidance with exceptions and appeals. Contact the Center at 888-267-5669 ext. 1 or email rc@amputee-coalition.org.
After a hip disarticulation or hemipelvectomy amputation, you need to be well informed about your prosthetic options. Your prosthetist should work with you to achieve a comfortable fit and offer design options to suit your activity level, functional ability, and lifestyle. Get informed about your prosthetic device options.
This guide is just one of the resources the Amputee Coalition provides to help the limb loss and limb difference community live well. To order the guide and for more information, visit our website.