Blog | beyondthediagnosis

If it Looks Like a Duck A Biased Look at Mast Cells and COVID-19 Long Haul Syndrome

As COVID-19 rages on, an often overlooked group of people suffering with symptoms long after they have tested negative for COVID-19...

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At Least It's Not Cancer

The other day at the market, I ran into an old friend. Our children had gone to elementary school together so, of course we asked about...

Dear Congress

This story is not for the moms in the rare disease community because they are this story. This story is for the mostly old, mostly white,...

Google, Facebook and the Subculture of Rare Disease Medicine

When my daughter first presented with hyperpigmented macules, I brought her to her pediatrician. When her pediatrician did not have an...

Repurposed: How I Found a Treatment for My Daughters

Sometimes, something crosses our path that appears to mean nothing to us but we check it out anyway because our gut tells us to. That is...

Diseases Without Doctors

Globally, there are 350 million people suffering from 7,000 different rare diseases. It takes an average of almost 8 years to get...

Rare Diseases: A Life in the Shadow of Doubt

Growing up, I knew that more than anything, I wanted to be a mom. Long before I had children, I worried about being a good mom. I wanted...