Perspectives of The Pompe World

There is no right or wrong way to cope with receiving this diagnosis.

You can be in every stage of grief in a single day or live in one stage for weeks. Maybe you skip some stages entirely. Maybe you never make it past a single one.

There is no itinerary to grief.

There is no right way to navigate life after this. Some people are fueled into advocacy, some are private and quiet. Some tell the world while others share with a select few close people.

However you move forward after learning about a diagnosis, it’s okay to do so.

Take the time you need.

Feel whatever you feel organically and unapologetically.

Don’t compare your response to another.

You don’t have to share your story.

You don’t have to hide your story.

Everyone is different and there is no right way.

Even when you are doing the minimum—it’s enough. If you do more than the minimum, it’s plenty. If you’re doing the maximum, I hope it feels natural and exciting instead of overwhelming and hectic.

In a small, rare community, we need each diverse situation and no effort is underrated.

You are not alone.

You are not obligated.

You are doing enough.