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"Ashton has helped me in immeasurable ways. Her knowledge of rare diseases and chronic illness made it possible for me to get my life back together."

Kiana McCutcheon


New Book Coming Soon!

Find parts of my story within these books.
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My Health Story

My healthcare journey began at age thirteen when I developed Postural Orthostatic Tachycardia Syndrome after an appendectomy. Despite the diagnosis, I lived as normal as possible until a knee injury I endured while running track in high school left me de-conditioned and homebound. I faced many challenges through high school and college, including a high-risk pregnancy and traumatic childbirth. It was the accommodations I received that enabled me to begin my career as a teacher. Unfortunately, that career was cut short due to my increasingly unpredictable and demanding healthcare needs.

Then another unfortunate situation occurred. Just as my grandmother passed away suddenly, my daughter began displaying un-settling symptoms of chronic illness. Our doctors became increasingly dismissive of our needs, leading me to conduct my own research for answers. On top of this, my mother and other family members had been experiencing their own health issues. It wasn’t until my mother connected with a doctor who had the resources we needed to connect the dots and lead me further into my tireless research.

I diligently began working to find answers, when we were finally able to get a diagnosis for the issues that had been plaguing the maternal side of my family. It was a genetic condition called Ehlers-Danlos Syndrome that myself, my daughter, my mother, and other family members were all finally diagnosed with. Ehlers-Danlos Syndrome is a disorder that primarily affects the connective tissue in the body, and has an impact on almost every part of our bodies. Upon receiving our collective diagnosis, we looked back into my late grandmother’s symptoms and determined that she, too, was likely affected as well.

After a long, arduous journey for my entire family, we finally found the answers and care we needed. It is my mission that through my work, I can prevent other families from suffering the same experiences our family endured.

Power of Story

Change is made through stories not lectures.

Using my story to help bring awareness and change to our broken healthcare system.

When people hear parts of my story, they are often left speechless as they try to wrap their minds around such a broken healthcare system. It was enough for me to go through it personally with complex chronic illness, but then going through it as a mother to my daughter -- well, that was an entirely different story. 


Healing starts with being heard.
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