BENEFITING: Coalition Against Pediatric Pain
This Is a Medical Story That Needs To Be Told
Our healthcare system is broken, and it’s hurting our most vulnerable population—our children. Kids with rare diseases whose care is too complicated for today’s cookie-cutter healthcare are being tossed around from specialist to specialist, isolated and abandoned. They are being denied access to the treatments they need, simply because their conditions are considered too complex.
In 2017, as our nation’s leading medical centers boast of innovation and high-quality standards of care, they are turning away some of their most vulnerable patients. It's a dark underbelly of medicine that needs to be addressed. Many of these kids have a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS). This condition has been called "The most neglected disorder in modern medicine," because it is so often under-recognized and poorly understood.
The lack of screening and understanding of Ehlers-Danlos and related conditions such as dysautonomia, mitochondrial disease, and complex regional pain syndrome (CRPS) are robbing a generation of kids of their childhood. These children are suffering—and even dying—tragically, and unnecessarily. Parents are desperate for help, and the stress and financial burden can be devastating for families who often have to travel thousands of miles to find experienced care. Many parents who’ve fought for their children’s right to care when symptoms remained unexplained, or went on to seek other medical opinions find themselves labeled abusers in a new trend of accusations called "medical child abuse". Some have even had their children taken away from them.
It’s time to raise awareness of this problem and bring about true change, more support, better-defined treatments, and access to medical care for people living with EDS and other rare childhood diseases. We need to raise our voices and engage the medical community in this important dialogue.
It's time to hear from physicians and families who ARE successfully helping kids with rare and complex conditions achieve a better quality of life.
This groundbreaking documentary takes an in-depth look at the unspoken epidemic of children with rare diseases, and their struggle to get the care they need.
In #Complicated, you’ll meet the inspiring families who have been pushed to the margins of medicine and have fought for a voice in their own care. And, you’ll see how a small group of dedicated and determined doctors have launched a heroic effort to help vulnerable kids with rare diseases survive—and thrive.
Complicated Should Not Mean Beyond Help.
Please Help Us Change Their World.