Managing Gaucher Disease

Talking to Your Medical Team

Having a lifelong disease makes it important for you to take the time to develop a good relationship with your doctor and medical team. Think of them as a partner in your healthcare. You can rely upon that relationship to help you make good choices for better health throughout your life.

What to tell your doctor or medical team

Gaucher disease can affect many parts of your life. You may find it painful to do normal activities or even to sleep. You may feel tired after a full night’s sleep. You may also find it hard to cope with changes to the way you look.

Sharing this information with your medical team is very important. This will help your medical team talk with you about the impact of treatment and ways to help you cope. Asking questions may also help you understand your condition better.

Feelings of fatigue, loss of appetite and pain in your bones or joints are all symptoms your doctor needs to know about. If you have a question or concern, or the symptoms get worse, call or see your doctor right away.

What to ask your doctor or medical team

Keeping track of your health can help you reach your goal of having better health and know if treatment is working. Ask your doctor how your recent test results compare with results of tests you have taken in the past. Find out what the results mean and how close you are to meeting your goals. If anything has changed, ask your doctor what should be done.

Get ready for your next appointment:

  • Step 1:
    Write down a list of questions before your visit so you can be sure to remember everything.
  • Step 2:
    Consider talking with your doctor about any physical changes or changes in the way you feel about your life, disease and treatment.
  • Step 3:
    Ask a friend or family member to join you at your next appointment to help you talk with your doctor about anything that makes you feel uncomfortable.

Concerned about an upcoming business trip or family vacation? Find out how you can travel without interfering with your treatment.