Today, you are my advocates: aHUS Awareness Day 2024!

Please share this disease & infographic with the world xo

Hello supportive readers,

You’re my advocates today.

Please help spread the world about this disease.

If you hear of opportunities for me to share my experience, don’t hesitate to drop me a line. I’m eager to participate with patient advocacy groups and organizations to help create awareness and make this very complicated disease more understandable.

If I’m going to live life with this rare disease, it’s my goal to advocate for other patients and for awareness. Early diagnosis and treatment are the key to recovery and quality of life.

I have had the great honor of speaking to the American Society of Hematologist’s convention about aHUS and this year I shared my journey, with other patients, at the FDA as well as USTMA and aHUS Foundation Conference.

I’m also so proud my article in the Huffington Post reached over a million readers.

But the work continues.

More people have this aggressive disease than are diagnosed. And sadly, many pass away before a diagnosis.

We do still need to remind doctors about the disease. Once triggered, I had hours and not days. Thanks to my team of doctors, I survived. Despite this disease’s rapid nature, it currently takes a while to diagnose (a month on average, which can be too late).

So please share with the physicians in your lives. It could save lives.

For More on AHUS:

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.