Issues for Adults with CSID

Adults with Congenital Sucrase-Isomaltase Deficiency (CSID) may face unique issues associated with employment and insurance coverage, interpersonal relationships, and medical care.

At some point, you will need to communicate your unique needs and situation to those around you, whether friends and family, those at work, in business meetings, or those in the service and transportation industries. When communicating with others, it is important to choose to keep it positive, keep it simple, and be clear about your needs and expectations. Graciousness is also key. It is best to proactively educate others about the basics of CSID. When explaining CSID to others, using common phrases such as, “Yes, even one cookie can hurt,” can help break down the complexity of the disease to a more commonly understood level.

CSID is a chronic issue that does not go away with gradual exposure or with time. Just as you went through a learning period to fully understand your disorder, other people also need time to learn and adjust. It should not be assumed that people around you instantly get it. Appreciate it when they do gain understanding or show empathy, but you should not expect it.

It may be necessary to use a safe-foods list or a foods-to-avoid list customized to your needs that can be provided for business meetings and other events where you lack control over your food choices. Such lists should be developed in cooperation with a physician or registered dietitian.

IMPORTANT SAFETY INFORMATION FOR SUCRAID^® (SACROSIDASE) ORAL SOLUTION

Sucraid^® may cause a serious allergic reaction. If you notice any swelling or have difficulty breathing, get emergency help right away.
Tell your doctor if you are allergic to, have ever had a reaction to, or have ever had difficulty taking yeast, yeast products, papain, or glycerin (glycerol).
Sucraid^® does not break down some sugars that come from the digestion of starch. You may need to restrict the amount of starch in your diet. Your doctor will tell you if you should restrict starch in your diet.
Tell your doctor if you have diabetes, as your blood glucose levels may change if you begin taking Sucraid^®. Your doctor will tell you if your diet or diabetes medicines need to be changed.
Some patients treated with Sucraid^® may have worse abdominal pain, vomiting, nausea, or diarrhea. Constipation, difficulty sleeping, headache, nervousness, and dehydration have also occurred in patients treated with Sucraid^®. Check with your doctor if you notice these or other side effects.
Sucraid^® has not been tested to see if it works in patients with secondary (acquired) sucrase deficiency.
NEVER HEAT SUCRAID OR PUT IT IN WARM OR HOT BEVERAGES OR INFANT FORMULA. Do not mix Sucraid^® with fruit juice or take it with fruit juice. Take Sucraid® as prescribed by your doctor. Normally, half of the dose of Sucraid^® is taken before a meal or snack and the other half is taken during the meal or snack.
Sucraid^® should be refrigerated at 36°F-46°F (2°C-8°C) and should be protected from heat and light.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

INDICATION

Sucraid^® (sacrosidase) Oral Solution is an enzyme replacement therapy for the treatment of genetically determined sucrase deficiency, which is part of congenital sucrase-isomaltase deficiency (CSID).

Important Safety Information for Sucraid^® (sacrosidase) Oral Solution

Sucraid^® may cause a serious allergic reaction. If you notice any swelling or have difficulty breathing, get emergency help right away.
Tell your doctor if you are allergic to, have ever had a reaction to, or have ever had difficulty taking yeast, yeast products, papain, or glycerin (glycerol).
Sucraid^® does not break down some sugars that come from the digestion of starch. You may need to restrict the amount of starch in your diet. Your doctor will tell you if you should restrict starch in your diet.
Tell your doctor if you have diabetes, as your blood glucose levels may change if you begin taking Sucraid^®. Your doctor will tell you if your diet or diabetes medicines need to be changed.
Some patients treated with Sucraid^® may have worse abdominal pain, vomiting, nausea, or diarrhea. Constipation, difficulty sleeping, headache, nervousness, and dehydration have also occurred in patients treated with Sucraid^®. Check with your doctor if you notice these or other side effects.
Sucraid^® has not been tested to see if it works in patients with secondary (acquired) sucrase deficiency.
NEVER HEAT SUCRAID OR PUT IT IN WARM OR HOT BEVERAGES OR INFANT FORMULA. Do not mix Sucraid^® with fruit juice or take it with fruit juice. Take Sucraid® as prescribed by your doctor. Normally, half of the dose of Sucraid^® is taken before a meal or snack and the other half is taken during the meal or snack.
Sucraid^® should be refrigerated at 36°F-46°F (2°C-8°C) and should be protected from heat and light.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

Indication

Sucraid^® (sacrosidase) Oral Solution is an enzyme replacement therapy for the treatment of genetically determined sucrase deficiency, which is part of Congenital Sucrase-Isomaltase Deficiency (CSID).