Learning About Pompe
Living with Pompe
Strategies for ChildrenWhat Can Make It Easier to Live With Pompe Disease?
Pompe disease is a chronic neuromuscular disease that causes changes that occur over time. Because Pompe affects everyone differently, it is hard to predict what kind of impact these changes may have on your day-to-day life.
Though you will surely find your own ways to cope with issues that arise, there are a number of strategies and sources of support that have helped people with other neuromuscular diseases adapt to the kind of challenges you may encounter.
The advice presented in the Website sections Suggested Strategies for Children and Suggested Strategies for Adults is from Pompe patient advocates, family members, and professionals who understand the needs of people living with chronic neuromuscular diseases.
Like other neuromuscular illnesses, Pompe disease may require lifestyle changes both in the practical sense - how one gets around or performs routine tasks - and in the emotional sense. Dealing with these changes can be overwhelming and exhausting, but there are strategies and sources of support that can help make it easier to cope with the frustrations and challenges you may encounter.
People with Pompe disease and their families may often become experts at problem-solving the physical challenges, but they may also need to build a network of emotional support to help them with the feelings they might experience, such as fear, anger, and depression.
Some may make use of various support resources that are available to people with Pompe disease and their families. Another option is consulting with a professional counselor or psychologist. More on how to find a counselor or other medical specialist >
Because Pompe disease is rare, those affected by it may feel alone and isolated. But thanks to numerous Pompe disease organizations, connecting with others who are living with the disease has become easier.
Communicating with others with Pompe disease can often provide a compassionate outlet for sharing one's hopes and frustrations with those who can easily relate. In addition, people with Pompe disease and their families may be able to exchange encouragement, advice, and insights to help each other draw strength and maximize quality of life.
Sometimes the medical care required for people with Pompe disease may exceed that which family members alone can provide. In these difficult situations, asking for and accepting help may be an important step.
Nurses and other qualified caregivers may help the family provide care for their loved one while allowing family members to take time off for themselves. The role of the caregiver and the amount of hours required depends on the needs of the particular family and the health status of the family member with Pompe disease. Some families might not need a caregiver while others may need someone full-time.
Overall, the experience of Pompe disease is highly individual. People affected by the disease have their own way of dealing with the challenges and finding possible solutions. But many people with Pompe disease and their families may find comfort in knowing there are others out there facing challenges of their own as a result of the disease. There is a community of individuals fighting back on a daily basis.
