Staying healthy is really not much different for people with Gaucher disease than it is for everyone else. Simple, common sense measures can help you feel your best.
Talk with your doctor before starting an exercise program or changing your diet. Your doctor can help you a develop a plan that meets your unique needs.
Maintain a Healthy Diet
A balanced diet ensures that you have strength and energy to handle the stresses of daily life. It also helps you maintain a healthy weight, which helps prevent fatigue.
Gaucher patients have increased caloric requirements because they have higher-than-normal metabolism. Despite the need for more food, patients with pronounced liver and/or spleen enlargement may have a suppressed appetite. The enlarged organs leave little room in the body cavity for a full stomach, so patients often report a sensation of feeling full, even after having only a few bites of food.
Mineral or vitamin supplements may be recommended for nutritional deficiencies that affect Gaucher patients, such as anemia or vitamin B12 deficiency.
Your physician may recommend consulting with a dietitian.
Although exercise can be challenging for people with Gaucher disease, physical activity is a great way to reduce stress, build strength. Talk to your doctor about exercise that might be appropriate for you.
If you are severely anemic (low red blood cell count), you may feel tired, even after a full night's sleep. You may have difficulty staying alert or concentrating at work or school. It may help to include naps in your daily schedule to help combat bouts of fatigue. Ordinary activities that a healthy person can do easily may require more effort for a person with Gaucher disease. Many people find that they can do what they please if they are careful to pace themselves and ask for help when it is needed.
Depending on the severity of the disease, children with reduced agility, with a tendency toward bleeding or bone fractures, or with enlarged spleens may be advised by their doctors to avoid contact sports. Instead they may be encouraged to take up noncontact sports, such as swimming, bicycle riding, or dance. If physical endurance is low because of breathing difficulties or anemia, anaerobic activities may he preferable. Finding the right activities can help children and adults develop new interests and make new friends.
Be sure to consult with your physician before starting an exercise program.
The health risks of smoking are well known. For people with Gaucher disease, smoking may compound any fatigue or shortness of breath you may feel as a result of anemia. Talk to your doctor about effective stop-smoking programs.
Stress seems to be an inevitable part of modern life, and if you have Gaucher disease, you probably have more to worry about than many people. Everything from managing infusion times to planning for the future may trigger stress, but there are steps you can take to minimize it. Learn to say no when the people in your life demand too much of you. Make time for yourself. Find people to talk to about coping with or your concerns with Gaucher disease. The Resources section has links to Gaucher support groups that may help.
Learn all you can about Gaucher disease and its symptoms. The better you understand your disease, the better you may be able to manage symptoms. You may consider keeping a log of your symptoms to help you understand whether any specific events or situations trigger them.
You can start by talking to your doctor. Your doctor can be an excellent resource and source of information.
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).