National Complex Regional Pain Syndrome Awareness Month
November 1 – November 30 CDT
National Complex Regional Pain Syndrome Awareness Month, observed in November, is a time to increase awareness of Complex Regional Pain Syndrome, the need for a cure, and spur advocacy on behalf of those suffering with the emotional, financial and physical burden of Complex Regional Pain Syndrome.
National Complex Regional Pain Syndrome Awareness Month educates that Complex Regional Pain Syndrome is a chronic pain condition that most often affects one limb, usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. Complex Regional Pain Syndrome is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.
CRPS symptoms vary in severity and duration, although some cases are mild and eventually go away. In more severe cases, individuals may not recover and may have long-term disability.
Advocacy is easier than you may think as it is simply public support for a particular cause. Your cause! Everyone has a story to tell, and you can use yours to raise awareness and advocate for our community.
When you speak with your medical providers, pharmacist, colleagues, family and friends about CRPS, you are using your advocacy skills. As an advocate, you can also be an important part of the legislative and policy making process.
Check out the Rare Disease Legislative Advocate (RDLA) website. RDLA is a part of EveryLife Foundation for Rare Diseases and has a wealth of information on how to speak up for CRPS in the rare disease community. Included are advocacy tools and tip sheets, along with information on how to foster a relationship with your Member of Congress, how to schedule a meeting with your legislator, and how to lobby for rare disease nonprofit organizations.#personalizedcause