A Mother’s Day Shout Out from An EDS Mom and The Producer of Complicated 

As a parent, it is hard to witness your child suffering with symptoms and physical pain. As mothers, we are often looked to, to make everything better, right?

When my kids started having medical issues, I quickly learned that there was no parenting book to teach how to comfort and support your child when an entire institution designed to help and care for them fails. My heart broke for the many children and families that I met during our diagnostic journey who were getting stuck in what felt like a strange, medical limbo and unable to access effective care. 

It was 2012 and the words “Ehlers-Danlos Syndrome” had to be repeatedly spelled out in medical appointments because most doctors didn’t even know what it was. Many families, like mine, felt almost apologetic when adverse events happened, or surgeries didn’t yield expected results. We felt like a burden, and quite frankly, were sometimes treated like one. 

We met many incredible doctors and healthcare providers along the way. But medicine just didn’t seem to recognize EDS kids who had symptoms across multiple body systems. The number of specialists that had to be seen just seemed almost hard to believe. 

I was extremely grateful to meet a dynamic group of moms who changed everything. 

They had children who shared similar symptoms of pain and fatigue, stretch marks and fainting, complications after surgeries, unexplained rashes and allergies. This group of mothers had banded together to create a new nonprofit dedicated to validating and supporting children and families who lived with chronic pain. 

The Coalition Against Pediatric Pain had a big mission back then, because there was very little awareness and no resources for kids with chronic pain.  Ehlers-Danlos Syndrome was poorly recognized and highly under-resourced. Worse yet, the multitude of chronic, rare conditions that are part of connective tissue disease were even less understood. The trauma, PTSD and fear of medical providers was becoming very real, and I witnessed the power of a mother’s love in action. These moms grew in numbers and volunteered their time to support and care for a population of families that were being gaslighted, psychologically misdiagnosed and treated like medical misfits.

Through camp, support groups and social media, this growing community supported and cared about each other, sharing information and resources, sending cards and care packages and above all, helping these children to cope with medical issues, feel validated and less alone. 

As if the stress and uncertainty of the EDS and rare disease diagnostic journey was not enough, another challenge to families emerged with the formation of a new clinical subspecialty in medicine, the child abuse physician. 

Tasked with protecting children, these doctors have one of the most important jobs in the world – keeping children safe. Unfortunately, their training in rare disease is lacking and their positions of power in hospital settings are often uncontested. TCAPP began to see an uptick in families being investigated by child protective services. In some cases families were separated and parents brought into court to defend themselves against allegations of abuse. It is a very complex issue and one that needs to be addressed because it is traumatizing and hurting rare disease kids and families. 

Seven years ago, TCAPP moms once again decided to stand up and take action by donating the seed money to start a film: Complicated. I want to recognize and thank them on this Mother’s Day. I am grateful for their role in helping to bring some of the darker historical challenges of EDS into the light. And I sincerely hope this film will help to be an agent of change and help the medical community to better understand the human toll of being discounted, misdiagnosed, or psychologically labeled. 

I am grateful to the families who bravely opened their lives to the camera to share their journey in an effort to help others. I am beyond grateful to our brilliant director, Andy Abrahams who cared enough to take on this project and give these kids a voice. 

Thank you & Happy Mothers Day to all our EDS Moms, 

Donna

Support Complicated:

You can donate here: Open Eyes Picture Website

Follow the film:

Website: www.complicatedfilm.com

Social Media:

https://www.facebook.com/complicatedfilm

https://www.instagram.com/complicatedthemovie/

Learn more about the matter on TCAPP: https://tcapp.org/

Donna Sullivan

May 2024