Living With Gaucher Disease

There's a lot you can do besides taking medicine to help manage the challenges of Gaucher disease. Healthy eating, exercise, cutting stress, and other lifestyle changes can help you live better.

Keep in mind that Gaucher is different for everyone. Some people have mild symptoms. Others have serious health problems.

No matter how you or your child is affected by the disease, reach out to a network of family and friends to get the emotional backing you need. They can give you the support that's so important in helping you face the health issues that Gaucher sends your way.

Also try to learn as much as you can about the condition. The more you know, the less scary it will seem. Read all you can about Gaucher. Ask your doctor lots of questions. And check out some of these steps that can help you or your child stay healthy and feel better.

Manage Pain and Fatigue

Gaucher can cause your bones to hurt. The pain, called bone crises, can be intense enough to keep you up at night. People with Gaucher disease can have joint pain related to arthritis. Tell your doctor about how you feel so you can get relief.

Gaucher treatments like enzyme replacement therapy (ERT) should help. You or your child can also take pain relievers. Adjust your activity level and take it easy when you hurt.

Another common complaint from Gaucher is fatigue. Anemia -- a lack of enough red blood cells -- can make you feel tired. To help manage this problem:

  • Plan rest breaks or naps during the day
  • Break up big tasks into smaller ones
  • Get help with chores or work
  • Go to bed earlier

Keep Mobile

If your pain and fatigue make it harder for you to walk or climb stairs, go to a physical therapist. He can teach you exercises that help you move around more easily.

If you're unsteady on your feet, talk to your doctor about using a cane or a walker to help avoid falls.

Get Exercise

Even though you may not feel like moving around when you're tired, your body needs exercise to stay healthy.

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The ideal activity program for Gaucher combines strength training, balance exercises, and aerobics (movement that gets your heart pumping). If it's OK with your doctor, try these:

  • Lift light weights to firm your muscles
  • Do one-leg stands, side steps, and calf raises to improve balance and prevent falls
  • Walk to strengthen your bones

Your doctor or a physical therapist can help you design a program that's safe for you.

Kids need exercise, too. If your child has weak bones or an enlarged spleen, he should avoid contact sports like football, where he could get hurt. Instead, encourage him to try one of these safer activities:

  • Swimming
  • Dance
  • Bike riding
  • Walking

Eat Well

If Gaucher gives you an enlarged spleen or liver, it can put pressure on your stomach. You might feel full after just a few bites of food. Even if you aren't hungry, you need to eat nutritious meals to stay healthy.

Your child's diet should have the right balance of fat, calories, and nutrients to help him grow. You or your child will need lots of calcium and vitamin D to keep your bones strong.

Your doctor and a dietitian can help you plan healthy meals. If you don't get enough nutrients from foods, you might need to take vitamin and mineral supplements.

Stop Stress

Look for ways to make your life more relaxing and less stressful. Exercise can be a big help. You can also try relaxation techniques like yoga or meditation.

Manage Body Changes

You'll want to spend a little time making some adjustments in your child's wardrobe. Gaucher disease can affect the way he looks. He may be shorter than his friends, or his stomach may look round because of an enlarged liver or spleen.

You can help him feel better about himself by buying new clothes that hide trouble spots. Roomy, stretchable outfits may feel more comfortable.

Get Support

Surround yourself with people who care for and support you or your child. When you feel worried or stressed, turn to close family or friends. Don't hesitate to ask them for help when you get overwhelmed.

If you feel sad, ask your doctor for help in finding a psychiatrist or therapist. A counselor can help you or your child learn more about and manage the effects of Gaucher.

Also ask your doctor about how to join a support group. You'll meet with other people who are going through the same issues. They can share their experiences and give you tips on how to deal with the daily challenges of living with Gaucher.

WebMD Medical Reference Reviewed by Louise Chang, MD on August 05, 2018

Sources

SOURCES:

American Psychological Association: "Coping with a diagnosis of chronic illness."

Gauchers Association: "Living with Gaucher Disease," "Orthopaedic Aspects of Gauchers Disease."

International Osteoporosis Foundation: "Nutrition."

Medscape: "Gaucher Disease Treatment & Management."

National Gaucher Foundation: "Balance: Prevention of Falls," "It's all about the Bones -- To swim or not to swim," "The Multi-Faceted Workout."

National Human Genome Research Institute: "Learning About Gaucher Disease."

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