Cobalamin Toolkits and Checklists

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.

Our Educators’ Guide to Methylmalonic Acidemia with Homocystinuria (MMA+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 MMA+HCU, how high levels may impact your child, how teachers and nurses can help, possible medicine side effects, helpful tips for success, and educational accommodations and additional services that might benefit your student. 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.

 

Our Educators’ Guide to Cobalamin E (CblE) and Cobalamin G (CblG) 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 CblE and CblG, how high levels may impact your child, how teachers and nurses can help, possible medicine side effects, helpful tips for success, and educational accommodations and additional services that might benefit your student. 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!

Special Education services are available for eligible students with disabilities. This handbook provides information about procedures, answers to frequently asked questions, and links to other resources. This information is meant to be an introduction to special education and may vary between states. For specific laws and regulations to special education in your state, visit your State Department of Education.

A Social Story: Time for A Shot

Navigating a rare disorder is full of challenges; but you don't need to do it alone. As a community of families with patients diagnosed with Homocystinuria Cobalamin defects, our goal is to support and provide resources to help you care for yourself and your child.

Giving a young child a shot can cause a lot of stress and anxiety, for all involved. We hope this social story will help provide an opportunity for you to teach your child why they need to get a shot, how to ease the process and educate them on the importance of medication management.

Outside Resources

Homocystinuria caused by cobalamin cofactor metabolism (cbl) defect occurs when the body cannot properly process cobalamin (vitamin B12). This infographic walks  you through the effects of the Cbl, symptoms, inheritance pattern, how it's diagnosed, specialist included in treatment and what patients lives look like if treated early!

Homocystinuria caused by cobalamin cofactor metabolism (cbl) defect occurs when the body cannot properly process cobalamin (vitamin B12). This activity is essential for converting an important amino acid—homocysteine—back to methionine, another important amino acid. When the body cannot process vitamin B12 as it should, blood levels of homocysteine increase, and blood levels of methionine decrease. This causes harmful symptoms to develop.

remethylation_EN_final-EHOD-COVER

E-HOD consortium developed information booklets on homocystinurias and related diseases for children of school age and for adults/carers. Booklets in different languages are available for free download and non-comercial distribution under flags shown below.

Would you like to request a physical copy of any of the tools seen above?

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