Peer Support Coaches

Coaches Provide Information and Advice on Living with CSID

Patients with rare disorders and their caregivers often feel isolated in managing their condition, because it is difficult to find others within their community that really understand their situation. Because Congenital Sucrase-Isomaltase Deficiency (CSID) is a rare disorder, many patients and caregivers do not have the opportunity to share their experiences with other patients and caregivers.

To address this need for community and support, SucraidASSIST offers peer coaches.

A peer coach is an adult patient, parent, or caregiver of a child with CSID who volunteers to be a resource to other patients.

Contact a SucraidASSIST Peer Coach

Brandi Rabon
Manager, Patient Support Services

The diagnosis of CSID may evoke many emotions, questions, or concerns in patients. Having an experienced patient/caregiver to speak with can be extremely valuable and may help alleviate some of the anxiety that may accompany a new diagnosis. Peer coaches are an important component of SucraidASSIST, QOL Medical’s comprehensive patient support program.

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 to Order Sucraid from Our Specialty Pharmacy

Important Safety Information for Sucraid® (sacrosidase) Oral Solution

  • Sucraid may cause a serious allergic reaction. Patients should stop taking Sucraid and get emergency help immediately if any of the following side effects occur: difficulty breathing, wheezing, or swelling of the face. Care should be taken when administering initial doses of Sucraid to observe any signs of acute hypersensitivity reaction.
  • Do not use Sucraid (sacrosidase) Oral Solution with patients known to be hypersensitive to yeast, yeast products, papain, or glycerin (glycerol).
  • Although Sucraid provides replacement therapy for the deficient sucrase, it does not provide specific replacement therapy for the deficient isomaltase.
  • Adverse reactions as a result of taking Sucraid may include worse abdominal pain, vomiting, nausea, diarrhea, constipation, difficulty sleeping, headache, nervousness, and dehydration.
  • Before prescribing Sucraid to diabetic patients, the physician should consider that Sucraid will enable sucrose hydrolysis and the absorption of those hydrolysis products, glucose and fructose.
  • The effects of Sucraid have not been evaluated in patients with secondary (acquired) disaccharidase deficiency.
  • DO NOT HEAT SOLUTIONS CONTAINING SUCRAID. Do not put Sucraid in warm or hot fluids. Do not reconstitute or consume Sucraid with fruit juice since the acidity of the juice may reduce the enzyme activity of Sucraid. Half of the reconstituted Sucraid should be taken at the beginning of the meal or snack and the other half 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.

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).