MODULE 4:
Relationships & Social Support
Relationships, intimacy, family planning, and social connection are important parts of life. This module brings together lived experiences from adults with MPS, practical resources, and expert guidance to help individuals and families navigate these topics with confidence.
Module Overview
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Dating & Romantic Relationships Guide
Real experiences and advice on dating, confidence, and communication.
Reproductive & Sexual Health Resource
Guidance on reproductive health, intimacy, and self-advocacy.
Family & Caregiver Support Chart
Tools to support communication, independence, and shared care.
Dating & Romantic Relationships Guide
Relationships look different for everyone. In this section, adults living with MPS share their experiences with dating, confidence, communication, and building meaningful connections.
Featured Voices
Eloise | MPS IVa
🇬🇧 United Kingdom
Play the video above to learn more from Eloise.
Ella| MPS IVa
🇬🇧 United Kingdom
Play the video above to learn more from Ella.
Niklas | MPS II
🇨🇠Switzerland
Play the video above to learn more from Niklas.
Reproductive & Sexual Health Resource
A respectful and empowering resource designed to support conversations about reproductive health, intimacy, and healthcare communication.
Content Covered in the Resource
- Managing Reproductive Health
- Puberty and Menstruation
- Sexual Health Conversations
- Healthcare Professional Communication
- Family Planning and Relationships
- Genetic and Relationship Counselling
- Intimacy and Body Changes
- Communication and Relationships
Featured Voice
Mia | MPS I
Therapist, educator, and advocate focused on relationships, disability, and intimacy.
Play the video above to learn more from Mia.
Family & Caregiver Support Guide
Balancing independence and support can be challenging. This section helps individuals and caregivers communicate clearly about tasks, responsibilities, and support needs.
Tasks/Activities
- Personal care (washing, dressing)
- Preparing meals
- Taking medication
- Managing appointments
- Transport/getting to places
- Household cleaning
- Shopping for food/ essentials
- Paying bills/managing finances
Chart Color Key
- 🟢 Green = I can do this independently.
- 🟡 Yellow = I may need help sometimes.
- 🔴 Red = I need help every time.
Building Support Networks
No one should navigate MPS alone. Building strong connections can provide emotional support, practical guidance, and a sense of community.
- International MPS Network
- MPS Society UK
- Metabolic Support UK
- Local MPS Support Groups (region-based)
- Instagram MPS communities
- Facebook support groups
- WhatsApp peer groups
- Discord rare disease communities
