📋 Your Down Syndrome Health Passport
Notes, questions, trackers, and your care team — saved in your browser.
What happened at your last visit?
Questions to bring to your next visit
What you’re tracking
Record what matters week to week — symptoms, meds, sleep, mood, vital signs.
My Care Team
Pulls from your kindness log — open the Encounter Card to add or rate.
🌐 FFH Network Trackers
Placeholder — Lucy’s integration. Tracker URLs wire in here.
Your modifiable risk factors, turned into a plan
Dr. Rob is prototyping a Modifiable Risk Factor Motivator widget on Stroke first. When it ships it embeds right here — turning each Down Syndrome-relevant risk factor into a tracked, evidence-backed action.
If you ever need to explain your Down Syndrome in 30 seconds, start here.
“I have Down syndrome (or I’m a caregiver for someone with Down syndrome). It’s a genetic condition (trisomy 21) that affects development and brings specific health considerations — heart, thyroid, hearing, vision, sleep apnea, and others. I’m receiving specialty care that’s coordinated. I wanted you to know because if specific symptoms come up that look minor, they may need urgent attention. And as an adult with Down syndrome, Alzheimer’s risk increases earlier than typical.”
📚Your 16 Course Modules
Click any module to open it. Each opens on the Knowledge Check — that’s your pretest. Taking it unlocks Learn It; reading each tab unlocks the next; finish by retaking the same check to measure your growth.
What Down Syndrome Is
Trisomy 21. Genetic condition with specific medical, developmental implications.
Common Comorbidities
Thyroid, sleep apnea, cardiac, vision, hearing, GI, behavioral health.
Behavior = Medical Signal
Sudden behavior change in DS often signals underlying medical issue.
Lifespan Considerations
Childhood, transition to adulthood, adulthood, aging — each different.
Specialty Care Map
DS-specific clinics if available. Pediatric to adult transition planning.
Med Adherence
Often caregiver-supported. Pill organizers, alarms, routine.
Screening Schedule
Thyroid yearly, sleep study, vision, hearing, dental, cardiac as indicated.
Sleep Apnea
Very common. CPAP often needed. Affects learning, behavior, mood.
Adult Alzheimer's
Risk rises starting in 40s-50s. Watch for cognitive change.
Make Every Visit Count
Caregiver brings observation log, specialty visit summaries, meds.
Your Care Team
DS clinic if available, multiple specialists, PT/OT/speech, social work.
Apps + Resources
DS-specific resources, community support, transition tools.
Insurance + Disability
Medicaid waiver, SSI, ABLE accounts, disability services.
Teach & Mentor
Self-advocacy is growing. People with DS speak for themselves.
Advocate
Equitable medical care, inclusive education, employment, community.
Research & Trials
DS-specific research expanding rapidly — cognitive, Alzheimer's prevention.