Happy Anniversary - a love letter to you

Rare Disease Girl Turns 2!

Dearest Lovely Reader,

Happy Valentine’s day! I’d like to profess my love and appreciation for you, dear reader.

I can’t believe it’s been two years since I’ve started publishing. What an epic few years.

I know you get too many emails, so the fact that you take time out of your jam-packed day to click on my messages and read them is a true honor.

Rare Disease Girl has subscribers across 40 states and 18 countries. It’s had year over year growth of 147% and over 45K unique impressions with double the average newsletter open rate.

You all are pretty amazing.

I appreciate all of you who have subscribed and shared this passion-project of mine.

When I started writing in my dialysis chair two and a half years ago, I aspired to be a beam of light in the darkness for people facing unknown and scary situations.

But I was in a scary situation, too. I didn’t know if my kidneys were going to repair. I started writing these words in the depths of uncharted territory.

Today, I think back on that version of me and I am just so proud of all she endured and learned on this strange path.

Almost dying helped teach me how to live. And I’m so grateful I’m still here. I hope to be of service.

I’ve been so honored to hear such wonderful feedback from you folks who have shared that my words and photos gave you a road-map to find life after diagnosis.

This disease and becoming a mother turned my life upside down. When I lost my job less than six months after returning from medical leave, you all rallied to help support me and I’ll never forget it.

Three years ago writing a Substack or memoir seemed totally bananas - I was living a relatively unremarkable 9-to-5, Honda Civic, vanilla life. Then over the course of a couple years, I went from practically dead new mom to being a walking miracle and going viral with the #1 article on Apple News.

This community has been there for me in dark times and in times of joy and success. I’m forever grateful.

You are the fuel that keeps me writing and advocating.

180 published articles later, I continue to walk in hope alongside you.

So on this anniversary and Valentine’s day, know you are profoundly appreciated.

Extra special love to you, CC Couchois, Roy Lenn, and Dr. Richard Burwick, for your founding level donation.

DID YOU MISS IT?

If you’re new here and wondering, “what happened to this lady?” read:

I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.

Thank you new paid subscriber Jeanine Eby. Your support means so much!

Thank you to CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.