Karen:

Adults living with late onset Pompe disease can be very different than children with the infant onset type of Pompe. It’s often an “invisible” illness and you can go years being misdiagnosed with more common ailments. The early symptoms are usually difficulty climbing stairs, trouble standing from a seated position and shortness of breath. It’s difficult for others to understand because you don’t “look” sick. It’s hard to explain how you can walk shorter distance and can’t walk around the block or up a hill. Personally I’ve found support in others also living with Pompe is so very important. They really get what the struggles are and we have formed a bond like family. Keeping a positive attitude is key to living life to its fullest with Pompe even if it takes a little more time to plan your adventures!