Lived Experience

Stories From Patients and Care Teams

To understand immune-related side effects, we need to listen to, and take to heart, the first-hand, lived experiences from patients and care teams.

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Patient Stories

How Advocating for Myself Paid Off

How Elizabeth's persistent questioning uncovered a glitch in a staging calculator

Self-Advocacy

Holly’s Experience

"A few days after her 17th birthday, my daughter Abby was diagnosed with alveolar soft part sarcoma ..."

Caregiver

Abby’s Experience

"It was getting difficult to walk far distances, and my leg had started hurting ... it got so bad that I couldn't walk at all..."

Immune Checkpoint Inhibitor

Meredith’s Experience

"I missed feeling strong and confident about what my body was capable of. I had become someone I didn’t recognize ..."

Hormone Therapy

Rich’s Experience

"I couldn’t answer my cell phone. I couldn’t text my children. I couldn’t do anything but sit in a chair ... "

Immune Checkpoint Inhibitor

Kara’s Experience

"It started with a rash on my arms and my legs, spread to my torso shortly after. Then came the joint pain ..."

Preexisting Autoimmune Condition

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Doctor Stories

Dr. Schneider’s Experience

"It’s important to loop in specialists who have ... experience with immune-related conditions."

Oncologist

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Oncologist, Preexisting Autoimmune Condition

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Immune Checkpoint Inhibitor

How to Help

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Lived Experience

Stories From Patients and Care Teams

Patient Stories

How Advocating for Myself Paid Off

How Elizabeth's persistent questioning uncovered a glitch in a staging calculator

Holly’s Experience

"A few days after her 17th birthday, my daughter Abby was diagnosed with alveolar soft part sarcoma ..."

Abby’s Experience

"It was getting difficult to walk far distances, and my leg had started hurting ... it got so bad that I couldn't walk at all..."

Meredith’s Experience

"I missed feeling strong and confident about what my body was capable of. I had become someone I didn’t recognize ..."

Rich’s Experience

"I couldn’t answer my cell phone. I couldn’t text my children. I couldn’t do anything but sit in a chair ... "

Kara’s Experience

"It started with a rash on my arms and my legs, spread to my torso shortly after. Then came the joint pain ..."

Doctor Stories

Dr. Schneider’s Experience

"It’s important to loop in specialists who have ... experience with immune-related conditions."

Example Post to Use for Styling

This is an H2 Heading Lorem ipsum dolor sit amet consectetur adipiscing elit sem bibendum iaculis odio, hendrerit lobortis penatibus phasellus non vivamus arcu gravida integer sodales, sociis laoreet feugiat class auctor dictum placerat

Example Post to Use for Styling

This is an H2 Heading Lorem ipsum dolor sit amet consectetur adipiscing elit sem bibendum iaculis odio, hendrerit lobortis penatibus phasellus non vivamus arcu gravida integer sodales, sociis laoreet feugiat class auctor dictum placerat

How to Help

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