About VALID
Learn why VALID was created and how one family's journey with hypermobile Ehlers-Danlos syndrome inspired a mission to improve awareness, understanding, and validation of invisible illnesses.
VALID is an independent awareness initiative dedicated to improving the recognition, understanding, and validation of invisible illnesses.
Because invisible doesn’t mean imaginary
Too many people spend years living with symptoms that are real, debilitating, and life-changing, yet difficult to explain, measure, or visibly demonstrate. Many are told that their tests are normal, that nothing appears wrong, or that their symptoms are psychological in origin.
For many, the hardest part is not living with the condition itself.
It is living without being believed.
VALID exists to help change that.
It began with my daughter
I am the father of a young woman living with hypermobile Ehlers-Danlos syndrome (hEDS).
For years, our family searched for answers. Like many others facing an invisible illness, we encountered uncertainty, conflicting opinions, and repeated reassurance that medical tests showed nothing abnormal.
As someone with a scientific mindset, I initially accepted those explanations. My wife did not. She continued searching for answers and advocating for our daughter when many others, myself included, had stopped looking.
That difference in perspective created tension within our family and nearly cost us our relationship.
Everything changed when I began accompanying my wife and daughter to her medical appointments and educating myself about hEDS, a condition my wife had been suspecting for some time. The more I listened, learned, and observed, the more I realized something important:
My daughter deserved to be believed.
After years of medical uncertainty, she finally received a diagnosis of hypermobile Ehlers-Danlos syndrome.
The diagnosis did not cure her condition. But it provided validation. For the first time, her symptoms had a name, and her experience was recognized as real.
That experience changed our family.
It also inspired the creation of VALID.
Our Credo
- Symptoms do not need to be visible to be real.
- Patients deserve to be heard, respected, and believed.
- Scientific evidence and lived experience are complementary, not contradictory.
- Better awareness leads to better outcomes.
- Understanding begins with listening.
Our Mission
VALID combines lived experience, scientific curiosity, critical thinking, and a passion for communication.
Our goal is to help patients feel seen, help families feel less alone, and encourage a better understanding of invisible illnesses among healthcare professionals and the public.
We are not a medical organization, healthcare provider, or research institution.
We are a family that learned firsthand how difficult it can be to find answers when a condition is poorly understood, and how transformative it can be when someone finally says:
🫶
I believe you.