Calling all Zebras!
What it means to live life RARE on Rare Disease Day!
Hi Everyone- It’s Rare Disease Day!
Today I send love to my rare disease community. Send me a shout today and throw a hello with your disease in the comments. Caregivers too! Let’s create awareness together!
If you have an instagram post, I’ll reshare in my stories- follow me and tag me! xo
Across the world, the population of America is living with a rare disease. That’s a lot of people.
According to Cleveland Clinic, another way to think about it, one kid in every classroom of 30 would have a rare condition.
Together we represent a large population - and our voices matter.
Living rare means living life to the fullest in its truest sense. We live the extremes. Sometimes all in the same day.
Pain to joy. Fear to strength. Weakness to perseverance. Despair to humor.
I feel all the things - sometimes all at once.
I live with atypical Hemolytic Uremic Syndrome or Complement-mediated Thrombotic Microangiopathy. It’s one of the 5% of rare diseases with a treatment. Awareness saves live and improves outcomes.
Thank you for supporting my journey and being a champion of my work.
When you get a rare diagnosis, you can feel isolated - but I’ve found a beautiful community and together we have so much power and strength and support.
While being rare is an immense challenge, it’s broken my heart (literally), but in the healing I have found my voice and I’m proud of what I’ve accomplished.
Life doesn’t end with a diagnosis. It just becomes rare.
RARE DISEASE DAY INTERVIEW
No-So-Fun Fact, I felt so bad during this interview and had a fever. But life goes on when you’re rare! Thanks LDA Research, Lucy, Caroline, and Andrew for having me!
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 new paid subscriber Sarah Ellis. Your support means so much! Thinking of you and your family! Love to Paul.
Also lbboren!! So grateful for your support!
Thank you to CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.
Thank you for shining a light on rare disease day. I was born with Idiopathic Hypertrophic Subaortic Stenosis, later renamed Hypertrophic Cardiomyopathy. It had no cure or treatment at the time, and I ended up with a heart transplant. I wrote a little bit about it this past Wednesday.
https://dawnlevitt.substack.com/p/today-is-hypertrophic-cardiomyopathy-058
Thank you for spending some of your precious energy and time to publish this, Taylor. I'm learning and will keep reading—best wishes to you and your lovely family, living Rare.