We'd like to thank our Patient-Parent Advisory Committee and Cobalamin Steering Committee for their contributions to our toolkits, checklist and guides.
The Back to Care guide is designed to help our classical homocystinuria patients needing a low protein diet navigate their way back to diet. It may also be useful for HCU patients who have been continuing with diet or newly diagnosed. The guide provides insight and guidance on how to reestablish care, provides a reminder of what HCU is, gives a diet (including formula) 101, and shares ideas on how to create a support network to help guide them through this new chapter in their lives! It's closed out with a letter from a patient.
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.
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.
Dreaming of college and counting down the days till you leave? At the same time, are you packing and thinking about how HCU needs to be factored into your new and exciting lifestyle?
Young adults with Classical Homocystinuria (HCU) from across the country have come together to share helpful advice in the pages of this booklet. They want you to worry less, learn from their mistakes, and enjoy this exciting time in your life (hint: it only happens once).
In addition, we at HCU Network America are here to help you navigate all the stages of college. Check our website for additional resources.
Our Educators’ Guide to Classical 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!
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.
HCU Network Australia has worked to incorporate the Guidelines for the diagnosis and management of cystathionine beta-synthase deficiency with other relevant information into one document for people with HCU to read and share with others. The Booklet aims to help the reader (the patient, their family or caregiver) understand more about classical homocystinuria, how it is diagnosed and the therapies it requires. The Quick Guide summarises key points from the Patient Information Booklet.
Homocystinuria caused by cystathionine beta-synthase (CBS) deficiency is also called classical homocystinuria. CBS is an enzyme. Enzymes are proteins that regulate the body’s tissues and organs. Specifically, CBS helps convert an important amino acid—homocysteine—to another amino acid that the body needs.
When the body makes too little CBS enzyme or none at all, or it makes CBS enzyme that does not work properly, levels of homocysteine and methionine (also an important amino acid) in the blood increase. The high levels of homocysteine cause harmful symptoms to develop.
Tools Enabling Metabolic Parents Learning (TEMPLE) are books and videos designed to help you provide simple education for the caregivers of your newly-diagnosed patients with inherited metabolic diseases. Resources also available to your patients on medicalfood.com. Available in English, Spanish and French and Arabic
Would you like to request a physical copy of any of the tools seen above?
Fill out the form below and we are glad to send you physical copies.