It's aHUS Awareness Day 2023
You all are aware, but let's give a shout to folks with the disease and continue to spread the word.
Hi Readers!
Giving a big shout to the folks who share my disease atypical Hemolytic Uremic Syndrome (aHUS) or Complement-mediated Thrombotic Microangiopathy (CM-TMA). You can read more about this alphabet soup here in my blog Welcome to my disease.
There is an amazing community around this disease and I’d love to shine a light on them. If you have aHUS or are a caregiver, please say hi in the comments and let me know where you’re reading from!
Check out the aHUS Alliance and the aHUS Foundation as well as the Facebook groups to connect with each other.
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.
If you hear of opportunities for me to spread the word and share my experience, don’t hesitate to drop me a line.I’m eager to participate with patient groups and organizations to help spread the word and make this very complicated disease more understandable.
Last year I spoke at 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. The disease has gone from ultra-rare to just regular rare, but I would argue that’s a case of survival and improved paths to a diagnosis.
More people have this disease than are diagnosed.
I know more treatments are coming and I’m hopeful we’re entering a new era of the disease where it’s not a death sentence if treated early. I’d also love to see more drug options for patients.
We do still need to remind doctors about the disease because it 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.
Other News
I was a guest on the Nation Alliance for Mental Health’s podcast Mental Health Mondays where I talk about aHUS, my history with mental wellness, and finding joy despite a challenging diagnosis.
Reader Comment of the Week
“Loved every word of this. I believe the learning and growing, not always easy or fun, the incredible inner work it takes to rebuild and transform is the hero’s journey. Though I, too, wish you never had to go through the trauma you experienced and the PTSD that inevitably follows, the power and inspiration revealed to you in your PTG is so very worthy and important. Thank you, Taylor, for sharing this so beautifully.”
- Betsy Lupetin
Thank you to new donor Susan Fusco-Fazio. She’s the author of a beautiful, poignant substack: BLUE SUNFLOWER
Thank you to Richard Burwick, MD and Roy Lenn for your founding level donation!
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