Peer Support Coaches

Coaches Provide Information and Advice on Living with CSID

Because Congenital Sucrase-Isomaltase Deficiency (CSID) is a rare disorder, many affected individuals and their caregivers do not have the opportunity to speak with others going through the same experience.

To address this need for community support, QOL Medical and One Patient Services offer access to peer coaches, who are fellow patients, parents, or caregivers of a child with CSID.

Peer coaches are a wonderful resource for other affected individuals and their caregivers to draw upon, especially during the early stages following diagnosis.

Access a QOL Medical Peer Coach

Brandi Rabon
Manager, Patient Support Services

The diagnosis of CSID may evoke many emotions, questions, and concerns. Having an experienced patient or caregiver to speak with can be extremely valuable to patients.

Peer coaches offer the following support services:

  • Provide empathy and psychosocial support from an experienced patient/caregiver perspective
  • Share tips on coping and daily living with CSID
  • Introduce patients and caregivers to online support communities
  • Direct patients and caregivers to credible disease information and resources, such as SucraidASSIST.com

Learn How You Can Get Sucraid from Our Specialty Pharmacy

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.
  • 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 are allergic to, have ever had a reaction to, or have ever had difficulty taking yeast, yeast products, papain, or glycerin (glycerol).
  • 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 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).