Talking with Children
Children who have Type 1 Gaucher disease may not understand why they are experiencing certain symptoms and why they may find it difficult to engage in certain activities. If they have started Cerezyme treatment, they may have questions about why they need to take it.
Younger children may have questions about their disease: "Why do I have to take medicine?" "Why does my stomach stick out?" Some talking points you may want to consider:
- You have something called Gaucher disease
- It isn’t contagious
- It’s something you have, but it doesn’t change who you are as a person
Chances are, they will accept a short answer and may not want any more information yet. When they do want to know more, they'll ask.
Older children may want more detailed information about the disease and how it affects them. If your child has started Cerezyme treatment, talk to your doctor about what your child might want to know, such as:
- How will Cerezyme help me?
- What is an infusion?
- How long does an infusion last?
- What can I do during an infusion?
- Does the needle hurt?
- Will I have to miss school or other activities?
Every child responds differently to the challenges of Type 1 Gaucher disease. Talk to your child’s doctor about how to best support your child.
Gigi is the story of a little girl with Type 1 Gaucher disease. Parents and children can read it together to find out how Gigi was diagnosed with Gaucher disease, how she felt before treatment, and what treatment was like for her.
Click here to download Gigi and Gaucher Disease (PDF, 1MB)
Indication & Usage
Cerezyme® (imiglucerase for injection) is indicated for long-term enzyme replacement therapy for pediatric and adult patients with a confirmed diagnosis of Type 1 Gaucher disease that results in one or more of the following conditions:
- anemia (low red blood cell count)
- thrombocytopenia (low blood platelet count)
- bone disease
- hepatomegaly or splenomegaly (enlarged liver or spleen)
Important Safety Information
Approximately 15% of patients have developed immune responses (antibodies) to Cerezyme during the first year of therapy. These patients have a higher risk of an allergic reaction (hypersensitivity). Your doctor may periodically test for the presence of antibodies. Serious allergic reactions (anaphylaxis) have been reported in less than 1% of patients. Symptoms suggestive of allergic reaction happened in approximately 7% of patients, and include itching, flushing, hives, swelling, chest discomfort, shortness of breath, coughing, cyanosis (a bluish discoloration of the skin due to diminished oxygen), and low blood pressure. If you have had an allergic reaction to Cerezyme, you and your doctor should use caution if you continue to receive treatment with Cerezyme.
High blood pressure in the arteries of the lungs (pulmonary hypertension) and pneumonia have been observed in less than 1% of patients during treatment with Cerezyme. These are also known complications of Gaucher disease regardless of treatment. If you experience symptoms such as shortness of breath or chest pain, with or without fever, contact your doctor.
Approximately 14% of patients have experienced side effects related to treatment with Cerezyme. Some of these reactions occur at the site of injection such as discomfort, itching, burning, swelling or uninfected abscess. Other side effects, each of which was reported by less than 2% of patients, include nausea, abdominal pain, vomiting, diarrhea, rash, fatigue, headache, fever, dizziness, chills, backache, and rapid heart rate. Temporary swelling in the legs has also been observed with drugs like Cerezyme.
Please see Full Prescribing Information (PDF).