CSID is a rare disorder and most physicians and other healthcare professionals such as registered dietitians (RDs) have not been specifically trained in caring for a patient with CSID. Physicians may have last heard of this extremely rare form of carbohydrate malabsorption during their medical school training and have not worked with prior CSID patients until now. This means that you, as the patient or caregiver, will need to become an active participant in managing CSID for the patient to thrive. Most people have been taught that physicians and other healthcare professionals will provide all direction and guidance on health management. However, since CSID is rare, patients or caregivers will also need to educate themselves and others involved in their care, which might include educating some healthcare professionals.
Every case of CSID is unique. While there are some standard recommendations, a particular diet modification or treatment protocol may work for one CSID patient, but not for another. For this reason, it is important that you, as the patient or caregiver, establish a good working relationship with the entire healthcare team involved in your or your child’s care. This team includes you.
If you are willing to do the research, you can become knowledgeable about CSID. Always remember that you are your own best advocate. If you are a parent/caregiver, you are your child’s best advocate.