Helpful Tips for Families Living with DTDS
Living with Dopamine Transporter Deficiency Syndrome (DTDS) brings unique challenges, but with the right tools, support, and mindset, families can find strength, connection, and hope. Here are some helpful tips for navigating life with DTDS:
1. Build a Support Network
You are not alone. Reach out to other families, join support groups, and connect with the DTDS Foundation community. Talking to others who understand what you’re going through can bring comfort, advice, and a sense of belonging.
2. Create a Care Team
Assemble a team of medical professionals who understand your child’s needs. This may include a neurologist, geneticist, physical therapist, occupational therapist, speech-language pathologist, and others. Keep open communication among your care team members.
3. Keep a Health Journal
Track symptoms, medications, therapies, doctor visits, and changes in your child’s behavior or abilities. This can help you notice patterns and share important updates with your care team.
4. Prepare for Appointments
Bring a list of questions to medical visits and don’t hesitate to ask for clarification. It’s okay to ask your provider to explain things in simpler terms or provide written instructions.
5. Focus on Daily Comfort
Small changes can make a big difference — such as adapting your home for easier movement, using supportive seating, or working with therapists to improve speech, eating, and motor skills.
6. Take Breaks When You Need Them
Caring for a child with a rare condition is demanding. Don’t forget to care for yourself, too. Seek respite care if available, lean on friends and family, and find time for rest and joy.
7. Stay Informed, But Not Overwhelmed
It’s helpful to learn about DTDS and research developments, but try to balance staying informed with protecting your mental well-being. Use trusted sources, and avoid information overload.
8. Advocate for Your Child
You know your child best. Don’t be afraid to speak up, ask for evaluations or services, and fight for the care and support your child needs in school, healthcare, and the community.
9. Explore Financial and Practical Resources
Look into disability benefits, transportation help, and funding for medical equipment or therapies. The DTDS Foundation and other rare disease groups can help you get started.
10. Celebrate Small Wins
Every bit of progress matters. Celebrate moments of joy, connection, and resilience — even the smallest steps forward can be a big deal.
Remember: You are doing an incredible job in an incredibly hard situation. The DTDS Foundation is here to walk with you — offering support, resources, and a community that cares.
