Living with a rare disease. Surviving. Rebuilding. Redefining.
Welcome to Ordinarily Rare:
If you’re here, chances are you’re searching for answers, for understanding, or simply for someone who gets it.
This space was created for that very reason.
Born from lived experience, this platform stands for one
simple truth:
You’re not alone, and your story matters.
WHO I AM
I live with multiple rare and chronic conditions, including Isaacs’ Syndrome, Membranous Glomerulonephritis, Lyme disease, Diabetes and Glaucoma.
What began as a series of unexplained symptoms gradually turned into a journey through diagnosis, uncertainty, and continuous adaptation.
This is where I share that journey, honestly and without filters.
WHAT THIS WEBSITE IS
This is not just a blog.
It is a space to understand what it means to live with conditions that are often invisible, complex, and difficult to explain.
It is about making sense of uncertainty, finding strength in small moments, and rebuilding life in ways that feel meaningful.
Where Should You Start
You can begin wherever it feels right:
→ Read My Story
Understand the full journey from the first signs to where things stand today.
→ Explore My Writing
A collection of reflections, experiences, and moments from this journey.
→ Go to Voices
Practical insights, questions, and learnings that may help you navigate your own path.
You don’t have to go through this alone.
If something here resonates with you, take your time, explore, and stay connected.
OUR PREMISE
After being diagnosed with a Rare-illness, experiencing countless challenges, and seeing my family go through many sleepless nights, I realized that there was an information gap that needed bridging. Over time, this thought gained strength and has finally manifested as this platform wherein we have the opportunity to explore the less explored and learn collaboratively.
WE'RE PASSIONATE
As no two health journeys are the same, I voiced my ups and downs, the mistakes, and the leamings contributing to my path to recovery. Now, through this initiative, I encourage other mighty hearts to participate and share the invaluable wisdom they gained through their unique experiences.
Alone, it feels like living ‘the insecure’; nonetheless, together we can do much more. Embrace it all.
media mentions
Welcome to Ordinarily Rare: A space for anyone navigating rare or chronic illness, patients, caregivers, advocates, and allies. Born from lived experience, this platform exists to remind you: you’re not alone, and your story matters.
RARE has a language of its own
my scars were on top of their throne
the memories of the past seemed to have flown
I was experiencing life setting a different tone
therefore, I sup my coffee
Very slow
The disease came like a breeze
allowed the colors of my life to freeze
the lows and the pain never left me at ease
and the prescribed pills were enough to sink me to my knees
therefore, I sup my coffee
Very slow
The spirit within was waiting to blare
it lit up a smile, had nothing to despair
since then, the ordinary started to dare
prepare, repair, and finally flare
therefore, I sup my coffee
Very slow
Traces of the hidden condition started to fade
found recovery, waiting to aid
reminding of all the promises it’d made
making myself more and more available to celebrate
therefore, I sup my coffee
Very slow
I think it was meant to be this way
my opening up to life made the ultimate pour every day
the rareness within found its doorway
and now I live with challenges as they allay
therefore, I sup my coffee
Very slow
Are we living with the dead?
or did they choose us
one day I shall know
till then, it’s not about me alone
my attempt will be to share and grow
therefore, I sup my coffee
Very slow
OUR PREMISE
After being diagnosed with a rare illness, experiencing countless challenges, and seeing my family go through many sleepless nights, I realized that there was an information gap that needed bridging. Over time, this thought gained strength and I began voicing my ups and downs, and mistakes and learnings which contributed to my path to recovery. These have manifested into this platform.
OUR AMBITION
To form a close-knit virtual community of volunteers who are devoted to helping buddies, experiencing rare health challenges. Now, through this initiative, I encourage other mighty hearts and caregivers to participate and share the invaluable wisdom they gained through their unique experiences.
Alone, it feels like living ‘the insecure’; nonetheless, together we can do much more.
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