Clara Guides

Independent Woman: A Patient’s Story of Adapting to the Unpredictable

Spinocerebellar Ataxia (SCA) is a neurodegenerative disorder that affects the cerebellum, which is part of the brain that plays an important role in coordinated movements, speech, and balance. Cameryn, an SCA patient, shared her experiences with the condition and its impact on her daily life.

Spinocerebellar ataxia (SCA)

No Answers, No Cure: How a Mother Provides Care Amidst Uncertainty

Cameryn’s diagnosis journey began with fluorescent lights and long wait times at the DMV. She had long anticipated the written test for her driver’s permit. When Cameryn returned in minutes, Laura knew something was wrong. Cameryn had failed her eye exam.

Patients Have Power

Mother-Daughter Duo: Navigating Life with SCA

In this episode, Aaron speaks with Laura and Cameryn, a mother and daughter duo, about a rare disease called spinocerebellar ataxia (SCA) and the way it's impacted their lives.

advocacy

The Ultimate Patient Guide: Tips and Tricks You Never Knew

Living with a chronic illness can be painful, frustrating, and exhausting. The Ultimate Patient Guide is a series of tips, tricks, and resources from patient advocate Alison Rothbaum aimed to empower people everywhere with the tools necessary to navigate their healthcare journey.

Farber Disease

Inside a family's fight against rare disease

Doctor after doctor, specialist after specialist, seemed to concur on only one point: They had never seen anything like what was happening to Santi.

Researching a new therapy for an ultra-rare disease: A look into the science of Enzyvant with Dr. Alex Solyom, senior medical director

We were lucky enough to have Dr. Alex Solyom join us for the pod. Dr. Solyom is the senior medical director at Enzyvant, where he and the team research a new therapy for an ultra-rare disease called Farber disease.

Farber Disease

Genetic Testing Q&A

Genetic testing is “a type of medical test that identifies changes in chromosomes, genes, or proteins."

Patients Have Power

Advocating for Rare Disease in Mississippi

A newborn screening is a routine procedure. Shannah didn't give it much thought as she brought her daughter, Emmalyn, home from the hospital. But a late-night call set her down a road towards advocacy that she couldn't have predicted.

Patients Have Power

Diversity in Clinical Trials

In this episode, we tackle the topic of increasing inclusivity in research. We're talking to three amazing women from the Accelerated Cure Project for MS. We cover the MS Minority Research Engagement Partnership Network.

Patients Have Power

Beyond Sweat: How Hyperhidrosis Shapes Everyday Life

Maria Thomas joins Lilly in honor of Hyperhidrosis Awareness Month to talk about her “life as a puddle” and inspiring advocacy work.

Patients Have Power

Healthcare is on the ballot, with Matt Cortland

Matt Cortland joins Aaron to talk about the upcoming midterm election and what's at stake for patients.

Patients Have Power

Chris Snider from Tidepool.org

Chris Snider, Type 1 diabetes advocate and Community Manager at TidePool joins Lilly on the Patients Have Power podcast.

Clinical trial guides

How you can make an impact in medical breakthroughs

Clinical research offers hope for many people, because it helps us find better treatments. Clinical trials are the core of all medical breakthroughs, and volunteer participants are the most important part of any study.

Patients Have Power

Learning to advocate for equitable healthcare: How to make your voice heard

In this episode, we speak with Peter Morley, a self-described "accidental advocate" who, despite living with multiple chronic conditions, fights on behalf of all Americans for fairer healthcare access.

Cancer

Understanding targeted therapies for cancer

Learn about targeted therapy, a type of treatment that targets specific genes or proteins in order to stop the growth and spread of cancer.

inflammatory bowel disease

New treatments for inflammatory bowel disease (IBD) in clinical trials

Advances in our understanding of Crohn’s disease and ulcerative colitis have led to research that explores new pathways for treating inflammatory bowel disease (IBD). Here are some of the notable new types of therapies that are being evaluated in clinical trials.

13 Questions to ask to find the right doctor for you

There are many different ways in which people choose their doctors', and there can be serious consequences from selecting one that's a bad fit. Here are a list of questions to evaluate when you're trying to find a new physician who is knowledgable, respectful, and works well together with you.

healthcare

The Affordable Care Act: What is at stake

Everything at stake in this latest fight over the Affordable Care Act, from pre-existing condition protections to affordable access, and what patients can do to fight for their care.

Patients Have Power

Writing as Therapy: Learning to Cope with Chronic Illness

In this episode, we speak with Arthritis Ashley - a writer, patient advocate, and a powerhouse voice for those who live with chronic conditions, about her journey and ongoing projects.

Clinical trial guides

A step-by-step guide: Finding pediatric clinical trials for your child

Here are steps you can take to find pediatric clinical trials for your child, from learning about studies to connecting with the right physicians.

Clinical trial guides

Informed assent: How to include children in the decision to join a clinical trial

Even though parents and guardians must consent, or give permission, for their child to join a study, it’s important for children, when able to do so, to have a part in making a decision to join a study.

3 tips on how to be a caregiver for your child: Eat The Cake First

When my first daughter got sick — I kept looking for the "What to Expect When You’re Expecting” book for parenting a sick kid. Here are 3 tips on being a caregiver for your child that I've learned from years of caring for my chronically ill children.

Patients Have Power

Living with Ehlers-Danlos: From a Hysterectomy to a Tipped Heart

Molly talks to Lilly about life with rare diseases, getting a hysterectomy in your 20s, and what happens when you heart is in the wrong place.

Ulcerative Colitis

Steps to take when your doctor doesn’t listen to you

As a patient with a chronic illness, I know first-hand what it feels like when a doctor’s office isn’t listening to you. Using my experiences, I’ve come up with a step-by-step guide on actions you can take to advocate for yourself when you feel your doctor isn’t hearing you.

Clinical trial guides

How clinical trial participation is regulated for safety

While like any treatment option there are inherent risks for participating in a study, it's essential to understand both the risks and how policies keep patient safety a top priority in clinical trials.

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