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Holly John: Sickle Cell Disease Beyond Pain and Clinical Outcomes

Holly John/LinkedIn

Sep 24, 2026, 14:56

Holly John: Sickle Cell Disease Beyond Pain and Clinical Outcomes

Holly John, Senior Director of Patient Advocacy at Agios Pharmaceuticals, shared a post on LinkedIn:

“In uncertain times, when everything seems designed to be divisive, to pull us apart rather than bring us together, gratitude can feel almost countercultural.

Yet, as I have been reflecting during Sickle Cell Awareness Month, I’m reminded of how powerful and connecting gratitude is every time I’m with members of the sickle cell community.

Living with sickle cell means navigating pain, fatigue, hospital visits, uncertainty, and disruptions that can touch every part of daily life. Work, school, relationships, rest, and plans can all be shaped by what the disease brings from one day to the next. But if I’m honest, even those words don’t quite capture it.

Missed milestones, cancelled plans, nights spent in hospital instead of at home, opportunities delayed, and the exhausting reality of never quite knowing what tomorrow will bring. And a burden compounded by having to navigate a health system that too often does not work for you.

To carry a condition that asks so much of you is one thing. To then have to convince others that what you’re experiencing is real is something else entirely.

Perhaps that is why gratitude within this community feels so powerful. Because, despite and in spite of it all, they still find something to hope for. They still find reasons to celebrate one another. They still find joy, connection, faith and purpose.

For some, it’s the quiet refusal to let disappointment have the final word, to lose hope, or to stop imagining a better future despite the obstacles in front of them.

And for some, that hope becomes advocacy. It’s the not-so-quiet decision to sit in front of healthcare professionals, policymakers, and pharma companies (people like me) and share your story unflinchingly, to relive difficult experiences, to make yourself vulnerable in hopes to improve things.

Every time I witness that, I’m struck by the generosity of it. After everything this condition has already asked of them, and after everything the system has too often failed to provide, they still choose to educate, advocate and push for something better.

When you think about it, something about this gratitude resets your nervous system.

And maybe that’s what it means to be a sickle cell ‘warrior’. Not simply to endure, but to refuse to let pain become the whole story.

So in the spirit of gratitude, I am grateful for the people I have gotten to know in this community. For what they have taught me about perspective, compassion, and the power of showing up for one another. They have challenged me to listen more closely, think differently, and recognize that advocacy begins with caring enough to stay engaged when the conversation becomes uncomfortable.

I am grateful for the privilege it is to get to stand beside them as an ally and I remain committed to standing alongside them, listening, learning, and helping advance meaningful change.”

Holly John: Sickle Cell Disease Beyond Pain and Clinical Outcomes