About Arthrogryposis Multiplex Congenita (AMC)
Arthrogryposis Multiplex Congenita is a condition that affects the joints and muscles. Babies with AMC are born with stiff joints and weak muscles and often have to undergo extensive casting, surgery, treatments, and therapy to gain mobility and independence. There is no cure for Arthrogryposis. There is only treatment and therapy to improve function and then ongoing therapy and work to maintain that function because Arthrogryposis is a regressive condition, if treatment is not maintained and the body not used/moved, function will be lost and the body will try to regress back to how it was at birth.
Helping AMC Families Incorporated exists to support families affected by Arthrogryposis Multiplex Congenita (AMC) with the resources, education, and financial assistance they need to advocate for their loved ones, so they can effectively seek the medical support they need without barriers. Because we understand the roadblocks that often come with a rare medical diagnosis, we envision a world where families affected by AMC are empowered with all the tools, support, and resources they need to walk through the journey.
Your involvement is valuable in Helping AMC Families Incorporated carry out the mission of supporting families and providing resources based on real life experiences. To that end, we have created a survey that will record your experiences with your medical care team/s, results of your treatments/surgeries, stories about how well equipment did/did not work for you, and reviews of products you use in your daily lives, your experiences as a medical professional treating individuals with AMC, and more. Our goal is to compile and share this information to help overcome the loneliness and misinformation that comes with such a rare medical diagnosis.