We'd like to thank our Patient-Parent Advisory Committee for their contributions to our toolkits and checklist.
For many parents the first time you leave your child with HCU under the care of someone else, it will likely cause a lot of stress and anxiety. Try to breathe and remember, you are not the first parent who has gone through this! To help support you in this new chapter of raising a child with HCU we have developed a Caretakers Guide for HCU. Our Caretakers Guide to HCU will help you explain what Homocystinuria is, what foods are allowed, and how your child’s caretaker can help make this transition as smooth as possible for you and your child.
The New Diagnosis Guide for Cobalamin Disorders is designed to give you an over view of what the cobalamin disorders are, how it's treated, who might be involved in your care and support networks for families.
The information in this toolkit is not meant to replace the guidance of your physician and other healthcare professionals.
Upon diagnosis many people have questions about what to expect from their clinic visits. Usually our first visit to a whirlwind of people elicits emotions and you might not remember who you met, or the role they play. In addition to that, you might be unsure of what you should bring, or you may be nervous what will be done during your visit. We’ve tried to create a simple infographic that spells out who you may meet, what to bring, what things may be done. On the back is a frequently asked questions.
Our Educators’ Guide to HCU is designed to spring-board that discussion between you, the school nurse and classroom teacher(s). In our Educators’ Guide we give you an easy explanation of HCU, Helpful Tips for Teachers and Nurses, Educational and Nutritional Accommodations tools, as well as ways to ensure students are not left out of classroom celebrations. We know that teachers don’t have a lot of time, so this two page guide is the perfect amount of content to help get the conversation started.
When you have HCU or any other special dietary needs, being ready to handle difficult situations requires special planning, in addition to the typical things everyone needs to consider in the event of an emergency or natural disaster. Here are some key things to think about and discuss with your family today.
Prepare yourself in advance!