Perspectives of The Pompe World

Pompe Disease doesn’t discriminate. The variety of ages, locations, cultures, backgrounds, and disease severity is quite the range and only gets more diverse the more that it’s getting diagnosed. Among the sea of differences, one monumental thing is shared, and that is the diagnosis. Some have Pompe Disease, some have children and family with it, and some are simply friends of someone affected by it, but all of them enrich this unfortunate experience in a way that fills me with gratitude on a regular basis.

This community is full of people with a variety of gifts and each of these gifts make a difference within the community. Education, fundraising, legislature changes, pharmaceuticals, research, advocating, awareness spreading, or even gestures of kindness and comfort are just a few ways they contribute. Some of the efforts and endeavors are grand, while others are more subtle, but each of these improve the lives of people affected by Pompe Disease. I often feel inspired by so many of them and when I find myself reflecting I often think, “I’m so glad to be on their team.” Because making changes within the rare disease culture truly takes a team.

The support that I feel here is what truly gets me through the turbulent days, and so a thank you will always be in order.

Thank you to those who support us. Even a small donation or sharing of an article makes a difference and we are grateful for that support, no matter the size of the act. If you have made me feel supported in any way on this journey, I have noticed and I will never forget that. Every gesture makes an impact and encourages me.

Thank you to those who validate our experiences. Navigating this diagnosis is such a complex rollercoaster at times and the feelings and perspectives that exist within this journey are often difficult to experience and make sense of. However, so many people have talked me through them and offered insight or understanding that truly impacted me for the better. Discussing some of the hard truths and feelings is no easy thing but I have found people within this community who are safe and offer the empathy that make this all feel a little less isolating. Thank you for understanding and listening.

Thank you for your devotion to making a difference. Even if that motivation comes from being personally affected, the things you are doing benefit so many others. Improvements and changes could not occur without people like you and you are truly changing the future for not only my own family, but for families still to come to our community. The time and attention you’ve devoted is appreciated and praised.

It’s hard to imagine how much more difficult this journey would be without all of the amazing people who knit together this community and cause. I am grateful for you all and every part you play. The best thing about Pompe Disease has truly been the people.