We moved on up to #62 in Health and Wellness!!
Readers, I’m so incredibly grateful to you all! We honestly did this together!
In a category as congested as Health and Wellness with a title like Rare Disease Girl, charting in the top 100 is no small feat. But as you all know, my experience is rare but my message is universal.
With over 75K newsletters on substack, you all helped me rise. So here’s a little thank you!
For my paid subscribers, I’ll be sending you all some extra-special exclusive thank you emails in the next couple weeks.
You all know how hard I work on this. And I pledge to never use AI- these words will always be unapologetically human.
Right now, when everything feels so uncertain, I’m riding this wave of joy as far as it will take me.
Follow me on Instagram for more tips, pictures, and regular silliness.
DID YOU MISS IT?
A wave of miracles
I’m so honored when people with a new aHUS diagnosis find me. As I often say, I can’t promise healing, but I can promise hope.
Come with me to Hawaii.
If you’re new here and wondering, “what happened to this lady?” read:
Welcome to my disease. What is atypical Hemolytic Uremic Syndrome (aHUS) or Complement-Mediated Thrombotic Microangiopathy (CM-TMA)?
Hi, If you’re new here, I started writing a book six months ago 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. I hope to include excerpts here as I write. NOTE: This is not intended to r…
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 SUBSCRIBERS!
Susan - You are such an inspiration. Thank you, Mama Tan! I love watching Megan shine so bright in this world and I know that light is a reflection of you.
Thank you to Dienna D’Olimpio Harada, CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.