Travelling with MCAS, Allergies and Asthma

When you’re triggered by several environmental factors, even small outings can be a struggle and travel that includes an overnight stay may seem a distant dream.

With Mast Cell Activation Syndrome (MCAS), various allergies and asthma, it can still be possible to travel, however requires a ton more preparation, research and planning to pre-empt all situational triggers and how to minimise them. Scroll through this page to navigate this preparation process.

Modes of Transport

Selecting an airline:

On this link, you can view an airline report card rating airlines for how they handle allergies and asthma

Things to confirm with the airline:

Check the airline pre-existing conditions or medical conditions page on their website
You may be required to fill in a fit-to-fly form a few weeks before travel that's signed off by your GP so double check when booking travel
For severe lung issues, you may require a fit-to-fly Oxygen assessment, so again confirm this with your GP before you book your trip
Let the airline know that you experience reactions &/or asthma to fragrance and animal fur (__ plus all other triggers) and to accommodate if required on the flight (e.g. with moving seats, helping with treatment etc)
Ask them if you can go on a route through the airport that avoids duty free
Ask if any changes can be made to cleaning of plane to support your needs including toilet area, such as removing fragranced sprays from one bathroom that you’ll use
Ask when you board whether they can make an announcement about your triggers to kindly request that people don’t spray fragrance or avoid eating nut based snacks etc. They can never guarantee that there won’t be an issue so it’s always at your own risk, but this can help to emphasise the issue to fellow passengers. If it's a long haul flight and people will be freshening up towards the end, ask for multiple reminders on the PA system
When boarding the flight, a member of the cabin crew should confirm the allergy or trigger and you should let them know the location of your auto-injector or asthma pump

Transfers:

Whether it’s a taxi, friend’s car, coach, train or a domestic flight

Notify them of your triggers
Ask them to accommodate if there is a trigger and you need to change seats
Ask for the removal of air fresheners

Selecting your accommodation

Confirming that the hotel:

Can cater to dietary requirements
Has no carpets, can remove soft furnishings and cover sofas with a sheet to reduce dust and allergens
Seeing if they spray perfume in communal areas or not
Can clean the room with water and a sponge or provide a scent free liquid for them
Is okay with you bringing your own sheets and towels that are laundered with your own home laundry powder
Tip - Bring plenty of your own detergent for the hotel to launder the sheets and towels with this if they require washing - it depends on the way they wash things but in my experience they were willing to support with this - check this as a criteria before you book
You may prefer to bring a sleeping bag to sleep in that’s laundered with your laundry detergent for ease
Something I didn’t request but wish I has is to ask that all staff you’re likely to interact with (e.g. in the dining areas etc) kindly don’t spray fragrance
Ask what the medical facilities nearby to the hotel are like and whether they have equipment to handle anaphylaxis and asthma attacks
Bring post it notes as reminders about these requirements and keep them up throughout the stay even if they take them down (I learned the hard way)

A list to email the hotel with (of course amending according to your requirements)

Before booking I wanted to confirm if you can kindly accommodate:
- are scented fragrances sprayed around communal areas of the hotel?
- can zero fragrance or scented cleaning products be sprayed in our room please?
- can our room be only cleaned with water and a sponge?
- are rooms pet free or pet friendly? I’m allergic to animal fur so it’s important that no furry animals have been in the room
- can all soft furnishings like rugs, throw cushions or bed throws be removed from the room prior to arrival or armchairs or sofa beds removed or simply covered with a clean sheet please? (to avoid dust for my asthma)
- can my dietary restrictions and food allergies can be attended to by the chefs - I can provide a list in advance of travel
- is there a wheelchair hire or a buggy service across the resort as an option (my mobility is variable)
- is room service is an option for days where I perhaps cannot move (please share menu pricing if possible)
- I'll be bringing my own sheets (and laundry powder just in case) due to reactions to some laundry detergents just in case your sheets are an issue for me
- are there many stairs in the resort or predominantly level access?
-is it possible to request that staff we’re likely to interact with avoid spraying strong fragrance around the hotel during our stay?
-what medical facilities are nearby to the hotel and do they have equipment to handle anaphylaxis and asthma attacks?

Medication Essentials

Full doses of all medications all in hand luggage with a prescription script for proof of all meds
Bring all supplements (in hand luggage too), I put them in a pill organiser to keep less bottles in luggage
Rescue medications - Inhalers (multiple) - salbutamol etc, Epipen (ICE) and even a dose of oral steroids (e.g. prednisolone) for an emergency
- The oral dose of steroids will need to be prescribed by your GP for in case of an emergency
- Remember a heat protective case for Epipens - I use one from Allergy Lifestyle

General Things to Bring

Allergy Cards and Foods that you can eat cards - you can create your own using my template here
Portable air purifier - this can be mini (I tried Pure Enrichment for the journey) or larger but still portable to use in your room (I use Levoit, that fits in my hand luggage perfectly)
Bring several masks with an adequate filter for airborne allergens and fragrances
- I used Airinum - I sampled their Urban Air Mask 2.0 and Lite Air Mask and found the Urban Air Mask better
- Vogmask - I sampled these but they smelt a little of the chemical filter so when double layering them with a washable silk or cotton mask this was great and effective for me
Print an explainer on what MCAS is to help with reasonable adjustments

Consider your Histamine Bucket

To briefly explain the Histamine Bucket Theory, you can imagine your body with a histamine bucket that’s empty, but exposure to all things in the environment can gradually fill up the bucket to your personal histamine levels. You may completely tolerate these things on some days, as your histamine bucket doesn’t fill up to the limit as quickly. On other days it may overflow beyond the limits that your body can process the exposure to triggers and you’ll likely have more reactions and symptoms; to anything and everything. A combination of managing triggers, reducing exposure to known triggers, and taking medication could all help to manage the level of your bucket.

Isolate a few days or even weeks before hand to avoid triggers and keep bucket lower
Likewise, when you return home, allow time to recuperate - especially after the flight or journey where it’s harder to avoid triggers
Eat as low histamine as possible around this time to help keep your bucket as low as possible
I use Toxaprevent purple sachets and red pills to target my stomach and gut and flush out histamine and keep my bucket as low as possible

General Strategies

Using mindfulness techniques including guided meditations alongside other strategies when you’re having a reaction or flare up
- I've created a symptom flare up or reaction meditation, specially for people with chronic illness and with the words I'd imagined I'd want to hear during it - I used it on the plane and during the trip when reacting and it really helped me, so I hope it's equally useful
- Here's a link to listen on the FREE app Insight Timer
Pack slowly over time to avoid stress and overwhelm that can also fill up your bucket - you can find more information to prepare with the packing process on this page

Selecting Sun Lotion and Mosquito Repellent

Before you go I really recommend testing out scent free mosquito repellent and sun screen lotion as patch tests on your skin. This may mean ordering multiple products. I did a huge amount of research on this before leaving and am sharing the recommendations from others below. Remember that everyone's got different triggers and tolerances

Scent Free Mosquito Repellents:

Moskito Guard - scent free - I used this, it has a scent only for a minute or so and then it dissipates
Run a fan near you - air movement keeps them away. There is a bacteria on your feet that attracts the mosquitos (some people have it some don't). So if you rub antibacterial gel on your feet. They should stop biting. Here’s a un unscented antibacterial gel that you could try this with. @kira.collins - recommendation. Reference article
- I ordered and sampled this antibacterial and scent free hand sanitiser gel.
A mosquito net - pop up tents, these can be expensive but an option for putting over the bed in your accommodation, but not when out in the evenings
Life systems sensitive repellent - this was recommended to me by someone, I did sample and it has a scent which was too much for me personally

Scented with essential oils

All Terrain, Kids Herbal Armor, Natural Insect Repellent
- Water, Glyceryl Stearate, Beeswax, Glycerin, Potassium Sorbate, Citric Acid, Xanthan Gum. Oil of Soybean 11.5%, Oil of Citronella 10.0%, Oil of Peppermint 2.0%, Oil of Cedar 1.50%, Oil of Lemongrass 1.00%, Oil of Geranium 0.05%
VIE Anti Mosquito Spray-On Aqua Menthanediol, Paraffinum liquidum, Hexyldecanol, PEG-40 Hydrogenated Castor Oil, Cetyl Alcohol, Ceteareth-12, Cocos Nucifera Oil,Stearyl Alchol, Citric Acid, Postassium Citrate
Toddle Kids DEET-Free Insect Repellent Contains: Alcohol Denat, Ethyl butylacetylaminopropionate, Glycerin, Aqua (reviews said this is scented but possibly more natural?)

USA Options:

Proven odorless insect repellent
Stay Away
OFF unscented but with DEET, some reviews said was some chemical smell but not fragrance

Scent Free Sun Lotion or Sun Creams:

Greenpeople

Factor 30 face and body
The body lotion is labelled scent free but does have a very mild essential oil aroma naturally, I’ve used this for a while and it has a slight tan colour to it, the texture is a little thick and if you rub it too much it peels so you need to ensure you don’t do this
The face lotion is thin, doesn’t feel heavy and does protect well although as it’s only 30 I have to re-apply regularly. It can also peel off easily but I worked out that if I moisturise first with an oil such as rosehip oil or a good moisturiser then it won’t do this
- I wish they had a factor 50 in both of these

Altruist

This brand has been developed by a dermatologist and is completely scent free and high factor 50 protection
I was a little sensitive to the aerosol with the scent of the gas it emitted
I loved the factor 50 family spray - whilst it’s very white it rubs in clear and isn’t thick or heavy
The factor 50 face sun cream from Altruist was great too, light and spreads well and was my go-to for this recent holiday as it’s factor 50 so better for countries close to the equator

Bondi Sands

This Australian brand is the most inexpensive option and is also factor 50, it is ever so slightly thicker than the Altruist spray but still spreads well and doesn’t have any scent like the Altruist cream

Further Resources

Advice on travel with severe asthma - Asthma.org.uk
ER Protocol - this is a useful protocol to print and bring with you in case of hospitalisation with MCAS
Emergency card - this is a useful card that explains MCAS and its triggers - I printed and laminated this with sellotape and keep it in my EpiPen heat protective case sleeve

Organising travel insurance that covers pre-existing conditions such as MCAS, Allergies and Asthma

Prepare this all and get quotes before you book your flights and accommodation.
- You don't want a nasty shock of the price after you've booked!
Here’s a list of some comparison and specific sites in the UK
- COMPARISON SITES: (Go to the ‘pre-existing conditions’ page or filter for pre-existing conditions)
  - Money Supermarket
  - Go Compare
  - Medical Travel Compared
  - Compare The Market
  - Confused
  - Money Helper
- SPECIFIC SITES:
  - Insure and Go
  - Avanti
  - Post Office
  - All Clear Travel
  - Ok to Travel Ltd
  - Good to Go
  - Cooperative
  - Insure and Escape
Confirm the small print, including if they cover for c*vid and the terms for this
- Typically you will need to be up to date on every single possible vaccination/booster for this to be valid so definitely double check
Keep all of your health conditions listed somewhere easy to copy and paste
- I keep them on my notes app with the title 🚨 IN CASE OF EMERGENCY - ICE - MEDICAL INFO so it’s super easy to search to find
Enter them digitally but get on the phone if they’re not listed
- It’s a lot quicker to manually type them especially if you have multiple, however from my experience doing this getting on the phone in the end (after semi-completing the forms) was worth it. Plus, they may cover a condition even if it's not listed so double check this by calling.
Be patient and save yourself a whole day, or few days to research and then book this. It will be energy intensive, you may need to type in details lots of times across several different insurance companies.
- You don’t want to skip reading the crucial small print because of fatigue, so factor in time for this.
It may be better value to book an annual multi trip policy if you’re going to travel again in the year
If your travel partner DOESN'T have pre-existing conditions it may be cheaper to book this JUST for yourself so research both options.
- In our experience with this, it was hugely cheaper to just have myself on the policy booked with a company specific for pre-existing conditions as the premiums are higher. Despite travelling together, it’s worth investigating price differences to book separately if they’re completely healthy with zero conditions.
Bring printed copies of the insurance policy with you when you travel
- Especially if the wifi is limited but you need access to emergency documents, having these printed out can be life-saving if you need to claim whilst away

Key things to do before travel with chronic illness such as MCAS, allergies and asthma

Research the weather & climate of the destination
Organise travel insurance for pre-existing conditions
Ensure you’re up to date with any vaccinations or that you organise to have them 6-8 weeks prior to travel
Pack slowly and over several weeks to help you pace energy
A recent prescription script with you for all medications you’re carrying
A recent doctor’s letter with your conditions including a fit-to-fly confirmation
Checking the airline ‘medical conditions’ page and confirming you’ve filled out their forms if appropriate
Booking any mobility aids or medical devices into the flight
Airport mobility service and assistance service organised including layover
Assistance cards, badges or lanyards to advocate
Allergy cards and foods that you can eat cards (if you have dietary restrictions) - template to make these here
A detailed guide printed with what your conditions are and how they affect you to give to medical personnel in an emergency
Ensuring that the digital medical ID section on your phone is filled out with sufficient detail
Requirements and accessibility at accommodation confirmed, sending them allergies list and other specifics in advance
Ensure all necessary items are packed (based on these lists)

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