Rare Disease Advisor - Pompe Disease

In this Rare Disease Advisor patient column, Bruce Campbell reflects on riding the Absa Cape Epic while managing the hidden demands of Pompe disease — including effort, nutrition, hydration, and risk. Read more: buff.ly/8DR0cz0 #PompeDisease #RareDisease

EXCLUSIVE: John Crowley, the current President and CEO of the Biotechnology Innovation Organization (BIO), reflects on how his family’s battle with Pompe disease helped shape the biotech landscape. Read the full interview: buff.ly/GD5pWIc #MDAconference #PompeDisease

The hardest part about living with Pompe disease is that you will always feel tired, even when you start your day full of energy.#Pompe

Try not to always run to medication when something is wrong with your body. Sometimes you are in need of something natural like food, sleep or exercise. #Pompe

Have patience with your body, trying to move with damaging muscles is not easy. #Pompe

Gaining weight and losing weight is a challenge because your muscles are not always supportive. Educate yourself before starting a new diet. #Pompe

When you start getting depressed from getting weaker, find a way to pull yourself out of it. Sometimes you have to save yourself. #Pompe

Many of us don’t know how to eat healthy because we were never taught how to. It’s never too late to educate yourself on diet and nutrition.#Pompe

There’s always an easier way to do something. Be creative in ways that benefits you.#Pompe

There’s always an easier way to do something. Be creative in ways that benefits you.#Pompe

Be generous with your body even when it’s not moving the way you want it to. Be patient. #Pompe

If you have exhausting routines everyday, plan a day for you to stay home and rest the entire day. A body recharge is necessary.#Pompe

During winter your body will ache more and you’ll feel stiff in the cold weather. You might feel weaker than usual. #Pompe

A unhealthy lifestyle can interfere with your treatment. Just because you are on ERT doesn’t mean that alone will improve your health. #Pompe

It’s flu season and people around you are more likely to be dealing with a cold. The best prevention is keeping a healthy immune system by having a good diet. #Pompe

It can sometimes feel like treatment isn’t working but it’s always better stay on it opposed to not being on it. #Pompe

Even while in bed, exercise. Try doing range of motion with your legs and arms, as well as your feet and hands. #Pompe

Stay active by doing things that you enjoy so you don’t experience seasonal depression. #Pompe

If freezing temperatures are a struggle for your body, it’s okay to stay at home during cold temperatures if it’s more comfortable.#Pompe

Talk to others who live with the same rare disease as you do because it can benefit you. #Pompe