Through Hope and Prayer, I'm here!

My name is Reshmie, and I live with multiple rare diseases. Over the years, I have faced thyroid cancer, undergone a splenectomy, and had a portion of my pancreas removed in a pancreatectomy. My medical challenges have been heavy, unpredictable, and often overwhelming—yet I am not alone as I continue fighting.

Every day I remind myself: I am still here, and I am still going.

What Does “Equity” Mean in My Story?

For me, equity begins with simply being heard.

The hardest part of my medical journey has been getting doctors to listen to my symptoms, take my concerns seriously, and move forward with the treatments I need.

Even today, I’m still not on biologics because, for reasons never clearly explained, my doctor believes I’m “not ready.”

But my body disagrees. My symptoms disagree. And living in constant limbo is emotionally draining.

Equity, for me, would mean:

• Timely access to the right specialists

• Doctors who trust their patients’ lived experiences

• A healthcare system that does not delay treatments that could change and even save lives

Day-to-Day Life

My life has changed in ways I never imagined.

I can’t do much without assistance anymore. Each day comes with new challenges and the same chronic battles:

• Severe joint pain

• Dryness of the skin and mouth

• Painful mouth sores

• Difficulty eating

• High levels of inflammation—made worse by ongoing radiation

Simple tasks require energy I no longer have. Rest is no longer a choice; it is a survival strategy.

Rare diseases don’t just affect the body. They reshape your routines, your independence, and your sense of normalcy.

Hope and Strength

Despite everything, I still have hope and reasons to hold on.

I have one child, now an adult, who remains my greatest motivation. Watching them grow, live, and dream gives me the strength to keep fighting every single day.

And then there is my little Yorkie, my constant companion. He is with me from morning to night, sensing my pain before I even speak it. His presence brings comfort on days when my body feels like it’s failing me.

Love, in its simplest forms, becomes medicine too.

What I Want Others to Understand About Rare Diseases

Rare diseases are not invisible just because the pain can’t always be seen.

People like me need faster, fairer access to medical attention. We need systems that don’t delay care until conditions worsen. We need specialists who understand that rare doesn’t mean impossible, and that uncertainty shouldn’t mean dismissal.

Healthcare equity means hope.

It means dignity.

It means a fighting chance.