Patient Leader Certification: What's Your 60 Second Pitch?

Hello, my name is Ana Nevárez, and I am from Mexico.

Since I was very young, life has brought me many challenges, different kinds of pain, and health problems. At 25, when my symptoms became much more severe, I was diagnosed with Superior Mesenteric Artery Syndrome, my first rare disease. By then, there was no longer time for conservative treatment. The surgeries that saved my life have also placed me in extremely high-risk situations.

Today, I live with several vascular compression syndromes and more than ten associated comorbidities. The symptoms and challenges continue to grow, making every day a constant battle.

After understanding my diagnoses and the risks I face, I decided to transform this experience into a purpose. I am currently building the Organization for Vascular Compression Syndromes in Mexico, and I also participate in organizations, associations, and patient communities around the world.

I have learned that faith and resilience are our greatest allies. Accepting our vulnerabilities does not make us weak; it makes us human. I want to help create a more compassionate world, where no life is too rare to matter, and everyone has a place in society.

Hello, my name is Ana, and I am from Mexico.

Since I was very young, life has brought me many challenges, different kinds of pain, and health problems. At 25, when my symptoms became much more severe, I was diagnosed with Superior Mesenteric Artery Syndrome, my first rare disease. By then, there was no longer time for conservative treatment. The surgeries that saved my life have also placed me in extremely high-risk situations.

Today, I live with several vascular compression syndromes and more than ten associated comorbidities. The symptoms and challenges continue to grow, making every day a constant battle.

After understanding my diagnoses and the risks I face, I decided to transform this experience into a purpose. I am currently building the Organization for Vascular Compression Syndromes in Mexico, and I also participate in organizations, associations, and patient communities around the world.

I have learned that faith and resilience are our greatest allies. Accepting our vulnerabilities does not make us weak; it makes us human. I want to help create a more compassionate world, where no life is too rare to matter, and everyone has a place in society.

On my 33rd birthday, I went to the ER with excruciating stomach pain thinking I had an ulcer. It wasn’t and I was given antibiotics to treat a pretty common stomach bug. 2 days later, my legs became so swollen it was hard for me to walk. 4 weeks later, the kidney biopsy results confirmed my greatest fear - I was told I had a rare kidney disease called IgA Nephropathy, and it had already progressed. There was no cure and kidney failure was inevitable.

This was the moment my advocacy was born. I did as much research as I could and I never stopped asking questions or seeking other answers to help me on a journey that I knew I wanted to do my way. As a black woman living in a larger body, I anticipated there would be challenges unique to me because many systems and processes were not built for me or people who look like me in mind.

My name is Antoinette Ingram, and I am the founder of Thee Heavy Wait Wellness Collective. I help historically underrepresented communities navigate chronic kidney disease, dialysis and kidney transplant readiness with a specialization for those living in larger bodies.

Hello Warriors, my name is Erica Spruill and I am an Irritable bowel syndrome and Endometriosis warrior! I have been diagnosed with IBS going on 8 years now and Endometrosis for 3 years. It's been a wild ride of tests, surgery, procedures and more and I decided that it's time for me to bring awareness to these chronic illnesses especially for my African American community. I started IBS_warriors LLC to show the word that just because your illness is invisible, you are not. While starting Ibs_warriors I was so fortunate to land a spread in a magazine called LDL Magazine where I not only got to share my experiences with IBS and Endometrosis, but I got to show the beauty of this community!

My goal in all of this is to grow the impact of advocating for chronic invisible illnesses and helping the world see our invisible illness as a visible one. I want to one day talk to our lawmakers and help make changes or make new policies that can help the chronic illnesses community. I would love to be that monumental voice in the medical field that can use me as an example on how you can have chronic illnesses and still live!