Support Groups for Pompe Disease and Their Importance
Rare and chronic conditions such as Pompe disease can take an emotional toll on patients and caregivers on top of everything else. Between symptoms such as muscle weakness and fatigue, and feelings of isolation, coping can be a challenge. It may seem as if hardly anyone understands what you are going through. Pompe disease support groups may be able to help.
What is Pompe disease?
Pompe disease is a genetic disorder characterized by the abnormal buildup of a sugar molecule called glycogen inside cells. This buildup impairs the proper working of different organs and tissues, especially the heart, respiratory, and skeletal muscles.
Whether you’re a Pompe patient or a caregiver of someone with the disease, you may find it helpful to talk with others who are going through the same thing.
What are support groups?
Support groups consist of people facing similar challenges who meet, in person or virtually, to give support, share practical advice, and offer encouragement to each other. Groups usually are run by members and can be attended by both patients and their families — though some may be tailored specifically to only patients or just caregivers. Most meet regularly, while others may meed only as needed. Almost all are meeting online nowadays due to restrictions stemming from the COVID-19 pandemic.
Keep in mind that support groups do not take the place of counseling with a trained professional.
Would a support group be a good fit for me?
Support groups may not be for everyone. Some people may feel uncomfortable talking in a larger group and may prefer a smaller one, or vice versa. If you feel uneasy, consider attending a few times before deciding whether to continue. Look for a support group that works for you. Ask yourself whether you prefer structure and would enjoy having a group leader, or whether you’d like a less formal group.
Finding a support group
Ask your physician, counselor, or other healthcare professional for suggestions. You also can ask your friends who might know, or go directly to other individuals who have Pompe disease. Your local library or community center also may be able to help. Finally, you might want to check social media platforms for Pompe support groups or patient organizations.
Support groups and related resources
Following is a list of some Pompe disease support groups or resources globally that may connect you with other families affected by the disease:
- International Pompe Association
- Association for Glycogen Storage Disease
- Metabolic Support UK
- United Pompe Foundation
- Acid Maltase Deficiency Association (AMDA)
- Muscular Dystrophy Association (MDA)
- VSN–Vereniging Spierziekten Nederland
- Australian Pompe’s Association
- Selbsthilfegruppe Glykogenose Deutschland e.V.
- Associazione Italiana Glicogenosi (AIG)
- Pompe Association in Japan
- AEEG–Asociacion Espanola Enfermos
- New Zealand Pompe Network
- Pompe Support Network (UK)
Last updated: Nov. 24, 2020
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