How to Support Someone with a Rare Disease

A quick video on how to be an ally.

Happy Sunday Substack readers,

Thanks for being a subscriber. Today, I’m read regularly across 41 states and 12 counties. (I’m still missing Idaho, Louisiana, Utah, North Dakota, Oklahoma, Arkansas, Mississippi, and Alaska - so if you know anyone there who would like my work, I’d be honored if you shared RDG! I have a goal of getting subscribers from every state). I’m immensely grateful you’re here. May was a huge month with lots of milestones and adventures.

As anyone with fatigue like me, I’m grateful for June and more sunshine in my days. Bring on the light and the Vitamin D!

Above is a photo of Auntie Lila with July and I on a fun summer day. But Lila was also there on the scary days.

She was such a massive support in times of acute stress of July’s birth and my road in the hospital, as well as in the path after. In times of chaos, she was with us - and we love her so much.

She also washed so many baby bottles anytime she came by. A task I will never forget.

Auntie Lila and so many others were anchors on our wild sea. The world can be a frightening place - but we can be the light for each other when the road gets scary.

Thank you, Auntie Lila.

Here is a vid I made for Know Rare about how to support someone with a rare disease but most of the tips apply to any diagnosis.

---

Let me know if you have other suggestions for ways to help in the comments! xo

Comment of the Week:

“This playlist is so great, <3 it.” Philia Kelnhofer

---

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)?

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