People who have sustained catastrophic injuries (and their families) are often in need of very specific, specialized information regarding the injury suffered, the latest care and support options, research into new treatment options, and the psychological and emotional support that can come from connecting with other people who have suffered similar losses. For some of the categories of catastrophic injuries, the following resources may be helpful:
The Phoenix Society for Burn Survivors is an online collection of information and resources for the victims of serious burn injuries and their families. In addition to being an information resources, the society organizes an annual meeting for burn survivors, medical professionals and fire fighters.
The Model Systems Knowledge Translation Center provides information for survivors of several types of devastating injuries, including burn injuries. It’s resources address both the immediate needs, such as wound care, and long-term needs, including emotional and social issues, rehabilitation and employment.
The American Burn Association is primarily aimed toward medical professionals, however it also includes useful information both for coping with burn injuries and for burn prevention.
The Amputee Coalition is a nationwide dedicated to preventing, treating, and helping people live with limb loss. It includes a resource center with both a variety of printed materials available and free resource specialists available by telephone.
ActiveAmp provides information and contacts for “adaptive sports” — activities designed to accommodate amputees.
The National Amputation Foundation was founded in 1919 to provide assistance to military amputees, and it has since come to provide services to civilian amputees, as well.
Information for victims of spinal cord injuries is another of the areas covered by the Model Systems Knowledge Translation Center. It provides information for those living with spinal cord injuries, with both documents and videos covering topics from the latest research studies to techniques for coping with activities of daily living.
The United Spinal Association has been in existence for nearly 70 years. It is a large, national non-profit that provides information and other resources to both military and civilian victims of spinal cord injury.
The Christopher Reeve Foundation — named after he actor who suffered a spinal cord injury in a riding accident — provides information on current research studies, grants to non-profits that provides services to paralysis victims, and a large variety of print and video resources.
The National Federation of the Blind was begun in 1940 with the goal of fully integrating the blind into society. They offer resources to help the newly blind adjust to their condition, particularly by meeting with people experiencing blindness to learn how they accommodate the condition in their daily lives and work.
The American Foundation for the Blind was founded in 1921 to help people with vision loss reach their fullest capabilities. Their most famous member was Helen Keller. They provide support and knowledge to blind people and their families, along with supporting the development of “accessibility” tools and products to help people work.
The Society for the Blind is a non-profit offering support and resources in Northern California for people who are blind or have limited vision. They offer special programs just for youth and for the elderly, along with a store that offers numerous assistive products for the blind and visually impaired.
Reflex Sympathetic Dystrophy (RSD) Resources
The Reflex Sympathetic Dystrophy Syndrome Association is a national organization devoted to providing patient resources and supporting research into this devastating condition. Their resources page provides a large quantity of information on this condition, which is also known as Complex Regional Pain Syndrome (CRPS).
The American Chronic Pain Association offers information on medications, treatments, and pain management techniques for the severe pain that is the most challenging symptom of RSD/CRPS.
The Brain Injury Association of America is the oldest nationwide organization devoted to this condition. In addition to supporting research and prevention efforts, the association has a great deal of information available to TBI victims through the website and local affiliates.
In addition to the burn injury and spinal cord injury resources mentioned above, the Model Systems Knowledge Translation Center is also a storehouse for valuable information about traumatic brain injuries.
BrainLine is an online multimedia project offering information, support, and an opportunity to connect with others who have sustained traumatic brain injuries.
If you or a loved one has suffered a catastrophic injury, call me now at 916.921.6400.