Why Sharing Matters...

Quick read! The reason I started writing my story.

When I got home and caught my breath from being in the hospital, I felt this overwhelming compulsion to help people. So I started posting to TIKTOK and Instagram and shared my experience publicly.

In the meantime, I started writing the book…

Truth be told, I was really productive in dialysis. After they got a handle on my settings and I didn’t get raging headaches and crashing blood pressure, I started to write the book.

Then, GOD BLESS AMERICA, I got off dialysis. But suddenly, my writing time disappeared. I am a mom. I started working again. And I have a chronic illness. So in the new year, I thought, what is the point of the book?

I want it to be a tool. Something you give someone with a challenging diagnosis or someone who is caregiving, to understand life on the inside of illness… I want the book to be a companion in the dark.

And then I thought, I don’t have to wait to share… I can post online.

SO, the blog was born. Zach gave me the name Rare Disease Girl… and here we are.

Ever since sharing my story I’ve gotten notes like the one pictured above. People, some I know and some are strangers, reaching out to me that they found me and that I’ve made a difference for them.

When I first came home, my therapist asked me to find a role model in a similar situation and I struggled. I wish I had found someone like me when everything seemed so bleak.

I still struggle, but I do so well. I’m making an impact in every small way I can.

Thank you donors for helping me stay committed to writing. You all make me buckle down and keep going and I hope you know, by supporting me, you’re helping more than just me.

Much love,

Taylor

Here is my TIKTOK if you’re interested:

@taylorcoffmanmadeIn January, I had a baby and almost lost my life over and over. Awareness about atypical HUS is so important. It’s likely more people have this disease but don’t get treatment in time. The ICU nurses called me “the mama.” I fought hard to get home to my baby. So grateful to be here. I have so much to live for. #ahus #atypicalhus #raredisease #pregnancy #birth #baby #medicaltiktok #survivor #chronicillness #inspiration #motherhood #mother

Tiktok failed to load.

Enable 3rd party cookies or use another browser