is a complicated one but one I believe was meant to be shared with you.

I'm so happy
you are Here!

My Story

I navigated through my teenage years with some pain and symptoms that were challenging at times but overall remained latent. In my mid twenties after having a traumatic birth with our third child, I began experiencing symptoms that quickly progressed to struggling to get out of bed in 2008. I was first diagnosed with connective tissue disease, later diagnosed with Lupus in 2012. I spent years juggling my health, family life with four young children, and medical supplies that weren’t for me but my youngest son.

I continued to struggle with pelvic pain, heavy cycles, which caused heart issues and severe anemia in 2019. Eventually it all led to one of the worst medical experiences I have endured. After a decade of ignored symptoms I needed a radical hysterectomy due endometriosis and adenomyosis. Also needing not one but two blood transfusions due to internal bleeding in 2021.

 

To say life has taken quite a few unexpected twists and turns over the last 45 years is an understatement.

Most recently in 2024 after a lifetime of symptoms – muscle and joint pain, significant tension headaches, clicking joints, IBS, and being “very flexible, ” I found it all was related to having Ehlers-Danlos syndrome (EDS).
It has been a long and treacherous road but with each passing year I learned more about myself and how to better navigate the healthcare system.

Managing my own diagnoses has been difficult, but coping with the challenges I’ve faced with my children’s medical complexities has by far been the biggest obstacle of my life.

I have spent the last decade fighting to be heard and my experience valued in order to get the correct diagnoses and treatment for two of my children who have rare and chronic diseases.
I have experienced years of gaslighting and trauma – being dismissed, ignored, and questioned by not only medical and academic professionals, but by family and friends. It has been a soul searching, eye opening experience, one I wish no parent ever has to walk through. I have made it my life mission to help educate, support, and empower women and families to use their voice to better advocate for themselves.