Managing Gaucher Disease

Understanding Your Feelings

Having a lifelong disease may be hard to accept. Your feelings about Gaucher disease may change over time. Think about writing your feelings in a journal or expressing them in a drawing. This can help you to be more aware of any changes in your attitudes. By understanding your attitudes and feelings, you can try new ways to keep up your commitment to take care of yourself.

Ask yourself

Common feelings and life stages

Young Children:
Children may find it hard to be away from family during infusion time while at the hospital or clinic, afraid of needles and worried about looking different from their peers.
How to cope:
Have a family member stay with your child at the hospital and bring a special toy from home for comfort. Talk to healthcare professionals about making needles less painful. Explain that treatment will help your child catch up in size and gain more energy.

Teenagers:
When you are a teen, you may be worried about how your disease makes you different from your peers and issues you may have surrounding your delayed puberty. You may even deny that Gaucher disease is a problem.
How to cope:
Talk to your doctor about receiving treatments at home for greater privacy and convenience and know that with treatment you will catch up to your peers in size and maturation. Remember that the disease is always present and can be controlled with treatment.

Older Adults:
If you are an older adult, you may have a tendency to dismiss Gaucher-related problems as part of the aging process.
How to cope:
Talk to your doctor about your symptoms. Taking control of your health has lifelong benefits and it’s just as important to take care of your health now as it is at any age.

Get support

Getting the support you need is a big part of staying healthy. Talk with others about your experience with the disease. Reward yourself for managing your disease by doing something you enjoy. You should also think of your doctor as a partner in your healthcare. Find out how by learning strategies for talking to your medical team