You Are the Expert
Congenital Sucrase-Isomaltase Deficiency (CSID) is a rare disorder and most physicians and other healthcare professionals, such as registered dietitians, have not been specifically trained in caring for an individual with CSID. Physicians may have last heard of this extremely rare form of carbohydrate malabsorption during their medical school training.
This general lack of knowledge means that you, as a patient or caregiver, need to become an active participant in managing CSID. Most people think that physicians and other healthcare professionals provide all direction and guidance on health management. However, since CSID is rare, you might need to educate those involved in your care, including healthcare professionals.
Every case of CSID is unique. While there are some standard recommendations, a particular dietary modification or treatment protocol may work for one individual with CSID, but not for another. For this reason, it is important that you 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 or caregiver, you are your child’s best advocate.