The Power of One Voice: A Family's Experience with Pompe Disease

Kathleen Coolidge | April 30, 2013

At Genzyme, we believe that when employees are able to hear directly from a patient about living with a genetic disease that as a company, and as individuals, we become more compassionate and committed. And as a result, we are able to do even more for our patients.

Recently, I was asked to invite a family to speak about their experience living with a genetic disease to a large group of senior Genzyme employees at a global strategy meeting. I have invited numerous amazing, articulate patients to speak at Genzyme over the years, but I had never been asked to invite an entire family.

For obvious reasons, the insights offered by families are very different from those of individuals. We know that family dynamics are complex, layered by the years with emotion and bearing witness to one another’s life experiences. Listening to a family tell of their very personal, shared journey connects us to ourselves, in our own roles as fathers, mothers, brother and sisters. Because we all know what it means to be part of a family, it becomes an emotional experience even for the listener. 

I knew of one family in particular that I thought would be interested in sharing their story about what Pompe disease has meant to them. Graciously accepting our invitation, all four of them mother, father and two children – traveled to Massachusetts. Hearing this family articulate and share their very personal story was transformative for many people in the room. Without even trying, they opened their world to us–a crowd of 150 people–and allowed us the privilege of a glimpse into their lives.

Watching Genzyme’s senior leaders take in the emotional family experience was extremely gratifying for me. The audience clearly understood what the dad in this family was talking about as he openly shared his feelings of learning of his daughters’ diagnoses, his sense of feeling overwhelmed with this sudden and world shattering moment and their feelings now, as a family, of living with a sense of hope.

I never cease to be amazed at the power of a patient’s story, as told by the patient. Every time we at Genzyme think we have a grasp on the totality of the patient experience, we listen to a patient and are reminded at just how unique and individualized every experience really is. On an intellectual level, we all knew that a rare disease doesn’t just impact one person, but instead ripples across the entire family. We are all so grateful to this family for reminding us of this, and for helping us understand at a much deeper level how unique and individualized each family's experience really is.

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