Downloadable guides for Hurler syndrome
This section brings together clear, printable guides about Hurler syndrome (severe MPS I, MPS I H) for families, young people, schools and healthcare professionals. Each guide is designed as a short, practical PDF that you can read on screen, print, share with others and bring to appointments.
You will find checklists, information sheets and summary documents that turn complex medical information into everyday tools for planning, communication and care.
Newly diagnosed checklist
A practical, print-friendly checklist for the first weeks after diagnosis, including questions to ask and what to bring to appointments.
Hospital stay preparation checklist
What to ask before admission, what to bring, and how to plan for siblings, school and recovery.
Pain, fatigue and sleep diary template
A simple diary you can print and bring to clinic to help teams understand patterns and triggers.
My condition: Hurler syndrome explained
A clear, age-appropriate overview of Hurler syndrome that can be read together or independently.
Getting ready for an operation
What happens before, during and after procedures, with space for questions and comfort plans.
Moving to adult services: transition checklist
Step-by-step prompts for building confidence, understanding your condition and preparing for adult clinics.
Information for teachers about Hurler syndrome
A one-page classroom summary focusing on hearing, vision, stamina, mobility, safety and communication.
Classroom hearing and vision support
Practical adjustments that improve access to learning, including seating, communication, lighting and materials.
PE and school trip considerations
Inclusion-focused ideas for activity, access and fatigue management, plus prompts for trip planning and risk assessment.
Emergency anaesthetic information summary
A concise, print-ready summary of key airway, spine and multisystem considerations for urgent procedures.
Quick reference: multisystem follow-up in Hurler syndrome
A practical checklist for long-term monitoring across heart, lungs, bones, ENT, eyes and rehabilitation.
Transition to adult care overview for clinicians
Key principles for structured transition pathways, handover letters and joint paediatric-adult working.
Practical tools you can use and share
These guides are intended to help with:
- Explaining Hurler syndrome to family members, teachers, employers or new healthcare staff
- Preparing for specific situations, such as hospital admissions, school meetings or transition to adult care
- Remembering key information about treatments, emergencies and appointments
- Supporting self management, especially for teenagers and adults who want to take a more active role in their care
All guides are based on the scientific information used throughout this site, adapted into clear, plain language for everyday use. Living with Hurler syndrome (overview)
Choose the type of guide you need
Guides are grouped by audience so you can quickly find what fits your situation.
For families and carers
- Newly diagnosed checklist
- Hospital stay preparation checklist
- Pain, fatigue and sleep diary template
- Planning ahead overview for families
For children and young people
- My condition: Hurler syndrome explained
- Getting ready for an operation
- Moving from children’s clinic to adult services
For teachers and schools
- Information for teachers about Hurler syndrome
- Classroom hearing and vision support
- PE and school trip considerations
For healthcare professionals
- Emergency anaesthetic information summary
- Quick reference: multisystem follow up in Hurler syndrome
- Transition to adult care overview for clinicians
Getting the most out of these PDFs
- Download and save the PDFs that are most relevant to you on your phone, tablet or computer
- Print copies to bring to clinic visits, school meetings or employer discussions
- Share with others who support you or your child, including extended family, teachers, social workers and community nurses
- Use these guides as a starting point for personalised planning with your specialist team
- Check the “last updated” date on each guide so you know you are using the latest version
How we review and update guides
- Guides reflect the understanding of Hurler syndrome, treatments and care practices at the time of writing
- Content is reviewed periodically and updated where significant changes in care or evidence occur
- Each PDF includes a version number and last updated date
- Practice differs between countries, so local guidance should always be followed
Recommended guides for your situation
Making guides easier to use
- Clear, readable fonts and layouts designed for both screen and print
- High contrast text and simple headings for quick scanning
- Space on selected guides to write notes or add local contact details
- Many guides are suitable for screen readers, and child-friendly versions may be added where possible
Using and sharing guides
For families and adults
- Save the most relevant PDFs on your phone so they are always available
- Bring printed copies to appointments and school meetings
- Share with people supporting you, including extended family and community teams
- Use guides to prepare questions, not as a replacement for personalised advice
- Check update dates and replace older printouts when versions change
For healthcare professionals
- Direct families to specific guides after consultations
- Print and hand out copies in clinic, on wards or during teaching
- Attach PDFs or links to clinic letters where appropriate
- Use professional summaries to support colleagues less familiar with Hurler syndrome
- Use guides alongside local protocols and personalised discussion
Finding and filtering guides
- Use the category buttons to filter by audience (Families and carers, Young people, Teachers and schools, Healthcare professionals)
- Use search for keywords such as “hospital”, “school”, “transition”
- Each card shows title, audience tag, reading time, file type and an updated date
- Click “Download PDF” to open the file, then save or print as needed
Key points about downloadable guides
- Downloadable guides turn complex information about Hurler syndrome into short, focused PDFs for real life situations.
- There are guides for families, young people, schools and healthcare professionals.
- All guides are based on the same scientific information used throughout this site and are reviewed periodically.
- PDFs can be downloaded, printed and shared to support appointments, school meetings and planning discussions.
- Written information should always be used alongside personalised advice from your specialist team.