Travel Medical Kit Checklist for Alström Families

Traveling with Alström Syndrome takes more planning than typical travel. This checklist makes sure you don't forget anything critical — whether for a weekend trip, an international vacation, or an emergency departure.

Print and use as a packing list. Mark off items as you pack.

Pre-trip planning (1-2 weeks before)

Medical preparation

☐ Medical letter from primary provider (template in Letter Templates)
☐ Updated medical summary (1-page)
☐ ER quick-reference card (filled in)
☐ Care binder summary section
☐ Genetic test report copy
☐ Insurance cards (front + back, copy + original)
☐ Travel insurance with pre-existing condition coverage
☐ Updated vaccination records if international
☐ List of nearest hospitals at destination
☐ Contact info for nearest specialist if available
☐ Notify TSA Cares (US) at least 72 hours before flight: 855-787-2227

Medications check

☐ Refill all medications with extra supply (10–20% extra)
☐ Pack medications in original prescription bottles
☐ Check medication storage requirements (refrigeration?)
☐ Schedule medication times across time zones if relevant

Logistics

☐ Notify airline at booking and 48 hours before
☐ Arrange wheelchair / cane assistance through airport if needed
☐ Arrange accommodations for accessibility
☐ Inform hotel of any specific needs (refrigeration, etc.)
☐ Plan transportation at destination

Carry-on essentials (NEVER check these)

Medications — all in carry-on

☐ All daily medications (with extra supply)
☐ As-needed medications
☐ Original prescription bottles
☐ Insulin (if applicable) in cooling pack
☐ Glucagon kit (if applicable)
☐ Medication for travel-related issues (anti-nausea, motion sickness)
☐ Pain reliever (acetaminophen / ibuprofen as appropriate)
☐ Antibiotic / steroid burst if prescribed for travel

Medical equipment — carry-on

☐ CPAP / BiPAP machine (exempt from carry-on limits)
☐ Insulin pump and supplies
☐ Continuous glucose monitor and supplies
☐ Glucose meter (backup)
☐ Glucose tablets / fast-carb sources
☐ Hearing aids and extra batteries / charger
☐ Cochlear implant processor + spare + batteries / charger
☐ Backup hearing aids if available

Documentation — carry-on

☐ Medical letter from doctor
☐ List of medications and conditions
☐ ER quick-reference card
☐ Insurance cards
☐ Travel insurance contact info
☐ Passport / ID
☐ Phone numbers for medical contacts

Accessibility tools — carry-on

☐ White cane (folded)
☐ Tinted glasses + backup
☐ Sunglasses
☐ Magnifier (if used)
☐ Smartphone with screen reader / accessibility setup
☐ Phone charger (long cable for hospital beds, plane seats)
☐ Backup phone if available
☐ Refreshable Braille display (if used)
☐ Headphones / earbuds

Checked luggage

Backup supplies (in case carry-on lost)

☐ Several days of backup medications
☐ Spare hearing aid batteries
☐ Spare glucose meter strips
☐ Backup glasses

Comfort and accessibility

☐ Pillow if helpful
☐ Blanket / lap throw
☐ Tactile labels for hotel room organization
☐ Comfortable clothing
☐ Layers for variable temperatures

Diabetes-specific (if applicable)

☐ Bag of supplies (test strips, lancets, infusion sets, reservoirs)
☐ Spare insulin (refrigerated as long as possible)
☐ Carb-counting reference materials
☐ Glucose tablets

What goes in your "personal item" (purse, small bag)

For quick access during flight or at destination:

☐ A few hours' worth of medications
☐ Glucose tabs or fast carbs (if diabetic)
☐ Small pack of hearing aid batteries
☐ Phone + chargers + adapters
☐ Snacks
☐ Water bottle (refillable, fill at airport after security)
☐ Wet wipes
☐ Hand sanitizer
☐ Tissues

At the airport

Through security

☐ Inform TSA officer of medical equipment before screening
☐ Request pat-down rather than full-body scanner for insulin pumps and CGMs
☐ Hand-inspection for liquid medications (if asked)
☐ Have medical letter ready
☐ Allow extra time

At the gate

☐ Notify gate agent of accessibility needs
☐ Pre-board if applicable
☐ Identify exit row alternatives if needed

On the plane

☐ CPAP can be used in flight (notify flight attendants)
☐ Insulin pumps continue working
☐ Hearing aid streaming works with most in-flight entertainment systems
☐ Hydrate (cabin air is dry)
☐ Move every hour or two on long flights

At the destination

First day

☐ Identify nearest hospital / urgent care
☐ Note pharmacy locations
☐ Set up medication storage (refrigerator if needed)
☐ Test electrical outlets work for medical equipment
☐ Adjust insulin timing for new time zone (with provider guidance)
☐ Set up tactile organization in hotel room

Ongoing

☐ Daily check that you have adequate supplies
☐ Monitor glucose / vitals as usual
☐ Recognize signs of illness early
☐ Stay hydrated
☐ Maintain routine where possible

Time zone management

For longer trips crossing time zones:

Diabetes management

Discuss with endocrinologist before trip
Generally adjust insulin timing gradually toward destination time
Continue glucose monitoring frequently during transition
Watch for unusual highs or lows

Medication timing

For most medications, maintain 24-hour cycle gradually
Some medications need precise timing (e.g., birth control)
Adjust ahead in eastward travel; adjust later in westward travel

Sleep / CPAP

Use CPAP every night including in-flight if possible
Jet lag is harder with sleep apnea; CPAP compliance helps recovery

International travel considerations

Documentation

☐ Passport
☐ Visa if needed
☐ Medical letter in English + destination language if possible
☐ International driver's license if relevant
☐ Travel insurance with international medical coverage
☐ Emergency contacts for destination
☐ Embassy contact info

Medical practicalities

☐ Vaccinations as recommended (CDC for US, NaTHNaC for UK)
☐ Confirm medications are legal at destination (some controlled substances vary)
☐ Identify English-speaking medical facilities at destination
☐ Translation app for emergency situations
☐ Carry medications in original bottles with prescription labels

Cultural and accessibility

☐ Research disability infrastructure at destination
☐ Accommodate cultural differences in disability acceptance
☐ Identify accessible transportation at destination
☐ Plan for translation of accessibility needs

Specific situations

Cruise travel

Cruise ships often have medical facilities — confirm capabilities
Inform cruise line of conditions
Bring all supplies for trip + backup
Disability accommodations available on most lines

Camping / outdoor travel

Cooler for medications
Extended supplies (no easy refills)
Identify nearest medical facilities to remote location
Cellular coverage check
Power source for CPAP / equipment

Altitude travel

Cardiac patients may need specific clearance for altitude >8,000 ft
Discuss with cardiologist
Symptom awareness for high-altitude effects

Cold-weather travel

Hearing aid moisture from condensation
Battery life shorter in cold
Insulin storage considerations
Skin protection

Hot-weather travel

Insulin storage critical
CPAP humidifier adjustments
Hydration crucial
Heat sensitivity in some patients

Specifically for the affected child or adult

A travel medical alert

Wear on the trip:

Medical alert bracelet identifying Alström Syndrome
iPhone Medical ID set up
Information visible to first responders

Comfort items

Familiar items reduce stress
Comfort blanket / pillow / toy for children
Familiar audio (audiobooks, music) for orientation

Communication tools

Pre-printed cards explaining condition (translation cards for international)
Translation app
Smartphone with relevant accessibility features

If something goes wrong

Medical emergency abroad

1. Local emergency services (varies by country — 112 in EU, 911 in US, 999 in UK)

2. Travel insurance hotline

3. Embassy / consulate

4. Family back home

Lost medications

1. Pharmacy at destination — bring prescription bottles

2. Local urgent care or ER for emergency refill

3. Travel insurance medical assistance

4. Manufacturer's emergency line for some specialty medications

Lost equipment (CPAP, hearing aid, insulin pump)

1. Travel insurance — many cover replacement

2. Manufacturer rep at destination if available

3. Local equivalent supplier

4. Emergency loaner from clinic if available

Illness during travel

1. Local urgent care or ER

2. Telehealth with home provider if possible

3. Travel insurance medical assistance for specialist referrals

Travel insurance considerations

For Alström families, travel insurance with pre-existing condition coverage is essential. Standard travel insurance often excludes pre-existing conditions.

Look for:

☐ Coverage of pre-existing conditions
☐ Comprehensive medical coverage
☐ Emergency medical evacuation
☐ 24-hour emergency assistance
☐ Medical concierge services
☐ Pre-trip cancellation for medical reasons
☐ Coverage for medical equipment loss

Companies that cover pre-existing conditions vary. Read terms carefully.

Frequently Asked Questions

Can I bring liquid medications through TSA?

Yes. Liquid medications and accompanying items (gel ice packs for insulin) are exempt from the 3-1-1 liquid rule. Inform TSA officers, may be inspected separately.

Will my insulin pump or CGM be damaged by airport security?

Generally no. Insulin pumps and CGMs should NOT go through full-body scanners or X-ray machines — request hand inspection or pat-down. Walk-through metal detectors are fine.

What if my CPAP machine voltage doesn't match?

Most modern CPAP machines auto-detect voltage 100-240V. Bring a plug adapter for outlet shape; voltage converter usually not needed. Confirm with your specific device.

Is it safe to bring controlled substances internationally?

Some medications legal in your country may be illegal in others. Research before travel. Bring prescriptions in original bottles with provider letter explaining medical necessity.

What if I run out of medications abroad?

US prescriptions don't transfer internationally. Strategies: bring extras, get a "duplicate prescription" in the destination country (sometimes possible with US prescription), use telehealth with home provider for emergency refill, contact pharmaceutical manufacturer.

What about cruise ships and altitude?

Cruise ships rarely reach high altitude. Most concerns about altitude are for mountain travel above 6,000-8,000 ft. Discuss with your cardiologist if you have cardiomyopathy.

Travel Medical Kit Checklist for Alström Syndrome