We have met too many families with heartbreaking stories of years and childhoods lost, trying to find effective care.
Our healthcare system is broken, these stories need to be told.
Imagine your child suffering in pain with progressive disabling symptoms that affect multiple body systems but physicians no longer want to treat them because they aren’t getting better. You push for second, third or fourth opinions and suddenly find your parental competency being challenged or worse yet, you risk losing custody of your child. This is the real, hard to believe scenario that is playing out today, as top medical centers that boast innovation and high-quality standards of care are turning these children away, and rare and complex kids are suffering and even dying, isolated and unsupported.
Many of these kids have one thing in common, an under-recognized and poorly understood genetic connective tissue disorder called Ehlers Danlos Syndrome. EDS, along with some of it’s co-morbid conditions such as Dysautonomia, Mitochondrial Disease and Complex Regional Pain Syndrome, can create a complicated diagnostic challenge for physicians, but medicine can and should be doing better by these kids.
Multi-award winning, Oscar shortlisted Director, Andy Abrahams Wilson is directing this important documentary that takes an in-depth look at this unspoken epidemic of children with rare disease and their unexpected struggle to get care, inside a healthcare system paralyzed with fear to change. Known for his critically acclaimed documentary about Chronic Lyme disease, Under Our Skin and Under Our Skin 2, Andy examines this place where illness, medicine, psychology, risk and money come together and how it may be impacting a generation of chronically ill kids.
By uncovering the suffering, identifying the challenges for both physicians and families and raising awareness in the medical community, we hope this project can fuel a real and authentic dialogue that acknowledges the injustices, motivates a change in attitude towards this complex population and helps kids living with EDS, and rare and complex pain conditions get access to medical care that can truly help them.
It is time to raise awareness and start a dialogue to bring true change, more support, better-defined treatment protocols and access to medical care for people living with EDS and rare diseases.
Please support this much needed project.