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Summer and MCADs

Many people living with mast cell activation disorders (MCADs) find heat and humidity to be significant triggers for their symptoms. Planning ahead for warmer conditions can help reduce the likelihood and severity of heat-related challenges.

TAMS committee member Jess Perlibachas has compiled a practical list of tips, strategies and products that may help support symptom management in hot weather. These have been grouped into four useful categories.

  1. For the body
  2. For the home
  3. For our medication
  4. For our travels

As with all aspects of living with a MCADs, each tip, strategy or solution should be considered on an individual basis. The information shared is provided for general information only and does not constitute a recommendation. TAMS has no affiliations with, and does not endorse, any products mentioned.

What strategies do you use to help keep your masties at bay during the heat? If you have any suggestions, please contact us.

For the body

Cooling headwear

Often made with materials that don’t result in dampness on the scalp or pillows etc, cooling headwear, caps and wraps are reusable products that may help to reduce scalp itch, heat fatigue, headaches and migraines. These products are also used to reduce the risks of hair loss when undergoing treatments such as chemotherapy.

Cooling mists

If you run hot, consider making a cooling mist or misting bottle (or similar) in the fridge, and alternate between them.

It is also safe to refrigerate many skincare products, and this may extend their shelf life in some cases. Some skincare also has cooling features at room temperature.

Smoothie kits

Smoothie kits can be a simple way to support nutrition on hot days or during flares, when appetite or energy may be low. Preparing a few different combinations of your “friendly fruits” using fresh or frozen options and storing them in reusable, freezer-safe bags can make meal planning easier.

For a more nutritionally complete option, consider adding protein powder, ground flaxseed or spinach. If bananas are not well tolerated due to histamine concerns, alternatives such as frozen cauliflower or pumpkin (raw or cooked), can add nutrients, fibre and create a thicker, creamier texture, making them especially ideal for smoothie bowls.

Reusable freezer bags

Protein powders

(pick a type that suits your dietary restrictions)

Cooling your face

Children’s or mini gel-bead ice packs can be useful for soothing heat-related flushing and itching in smaller or sensitive areas, such as the backs of the hands or ears. Face, ice or cryo rollers, stored in the freezer between uses, may also provide relief by gently cooling the skin. When used with light pressure and rolled from the centre of the face outward, they may help reduce swelling and provide a soothing effect.

Cooling towels

Cooling towels are commonly used by endurance athletes and work by drawing heat away from the body. They only need to be lightly damp to provide an evaporative cooling effect while still helping to keep you dry. For additional cooling, they can also be placed in the fridge before activity or used during flares to help intensify their effect.

Planning your exercise

Doing exercise in the coolest part of the day or breaking it up throughout the day. Research indicates that several shorter workouts (3 – 6 x 10mins) throughout the day can be as effective as one continuous workout of the same total time and intensity.

Fabric selection

Opt for natural breathable fabrics for clothing, sleepwear, and bedding. Good options include linen, silk, cotton and bamboo. Semi-synthetic fabrics such as viscose, lyocell/tencel also offer more breathability and make it easier for sweat to evaporate when compared to synthetics such as polyester and satin.

Sun protective clothing may be used during outdoor exercise, gardening, at the beach and even during long drives. Those who suffer from high perspiration and a related increase in itch may also consider sweat absorbing undershirts.

For the home

Maintaining your air conditioner

All air conditioners have filters that catch pollutants and dust (which can feed mould). To keep your air conditioner running efficiently and to improve airflow and air quality, check your system’s manual to see how often you should wash, vacuum, or replace the filters or filter pads.

Most manufacturers recommend cleaning filters every few weeks. However, how often you actually need to clean them depends on how much you use your air conditioner, your local climate, and whether there are additional pollutants, such as pollen or smoke, in your area.

This is also a good time to set reminders to replace or clean other important filters in your home. These include rangehood filters, bathroom exhaust fans, washing machine filters and pumps, dryer filters and dishwasher filters. You might also want to deep-clean your top-loading or front-loading washing machine.

Controlling humidity in your home

To prevent mould at home it is helpful to keep humidity as low as possible, ideally below 50 per cent. To support humidity management, when the air quality is good, the humidity is low, and it is safe, open doors and windows to let in fresh air. Even leaving a window slightly ajar can make a difference. You can find daily humidity levels on the Bureau of Meteorology and most state government websites also have a page on daily air quality.

Other things that may help manage humidity in the home include:

  • Consider getting a hygrometre
  • Buy dehumidifying plants, buying a dehumidifier or try DIY dehumidifying techniques
  • Use pedestal fans to ensure air circulation
  • Run the exhaust fan in the bathroom, and the rangehood exhaust for 15 minutes longer than usual on high-humidity days to help dry areas out
  • Consider turning on the rangehood exhaust after a dishwasher cycle finishes
  • Take lukewarm or cool showers (less heat = less steam). Those who can tolerate and enjoy hot, longer showers may consider getting Shower Dome (AU) or a Steam Stopper (NZ)
  • For those using evaporative cooling, consider switching off the water and running the fan only on high-humidity days. In order to support the system working efficiently it is also important to follow your system instructions on opening doors and windows when the pump is operating, and to close the vents and doors in rooms that do not require cooling.

Appliance and household heat management

Check your household and appliances are helping you stay cool, not making things hotter. Some helpful tips include:

  • Checking if the washing machine and dishwasher have inbuilt delayed start features. If so you can use the feature when hot wash cycles are needed so they can be done overnight.
  • If your devices don’t have such an inbuilt feature, but they can be left manually engaged, you might consider buying a digital or analog power point timer for the same reason.
  • Ensure any ceiling fans are spinning counterclockwise to create a cooling downdraft
  • For air conditioning, keep the doors and vents closed in any room that won’t be used. This will limit the overall area your system serves and speed up cooling. This is particularly relevant for those with single-unit cooling.
  • Where possible draw external awnings to reduce heat impact from direct sun, and consider using renter friendly UV and heat blocking window film or block-out blinds.
  • Seal any gaps in doors using products like weather strips, and draught or weather seals. These are available from your local hardware store. Focus on external doors and windows.

Food safety and refrigeration

Following the recent ​​​​​​Food Standards Australia New Zealand (FSANZ) recall of various contaminated baby spinach products (Dec 2022) TAMS is reminding everyone to be mindful of Summer food safety.

Those of us concerned about/required to minimise dietary histamine intake may already be conscious of keeping temperatures of chilled and frozen goods stable and have set their fridge/freezers accordingly. Unfortunately, the summer can give way to increased risks of fridges breaking or being without power for short bursts.

If your fridge does not have an internal thermometer with an alarm or a LED temperature display you may consider getting a digital fridge/freezer safe thermometer with an alarm and/or memory. It may also be wise to refer to your manual to see if thermometer calibration is recommended for your fridge/freezer.

Hydration hygiene (insulated water bottles, travel mugs etc)

Although insulated water bottles are a great way to have a plentiful amount of cool water on hand at all times, many of us are guilty of forgetting to clean them properly and enough.

Water bottles in summer heat provide perfect growing conditions for mould and bacteria, particularly in the case of metal and opaque water bottles with spouts/straws, silicon/rubber and hollow handles which are difficult to clean.

It is advised that water bottles should be washed as often as daily drinkware. You can do this using several simple methods, with vinegar (check if this is appropriate for your water bottles material type), bi-carbonate of soda, food-grade hydrogen peroxide, or a warm water and soap solution. Alternatively, you can buy specific bottle, lid and straw cleaning kits, as well as cleaning products designed for water bottles, thermoses and travel mugs. In all cases, they should be left out on an elevated drying rack after cleaning.

For our medicines

Heat exposure during delivery and postage

When ordering medication online or from interstate/overseas consider what steps you can take to make sure that product integrity isn’t compromised when being shipped/delivered throughout the summer. Consider asking merchants, including Compounding Chemists if they send their products in insulated boxes or sleeves designed for pharmaceuticals and consider getting a temporary parcel locker (AU) that is in an area that doesn’t get direct sunlight or is undercover (parking garage) or opting to get your package from an indoor postal service (NZ).

Keep medications in a place with low humidity and a steady temperature. Bathroom cabinets are not the best choice because the heat and steam from showers and lamps can fluctuate the temperature and humidity, which can cause medicines to break down faster. Generally, most medicines should be kept below 25°C, out of direct sunlight, and only refrigerated if the label or your pharmacist advises you otherwise.

For insights on correct storage of your specific medications you can review commercial consumer medicine information(AU)/medications datasheets (NZ) and speak with your Pharmacist or Compounding Chemist about any added tips to preserve its integrity throughout the warmer months.

Correct storage

Most epinephrine auto-injectors must be stored between 15–30°C in a dark place. They typically cannot be exposed to UV light or refrigerated as this will degrade the epinephrine and damage the release/trigger.

Consider purchasing an insulated or cooling for your epinephrine auto-injector or one that accommodates multiple medications that need to be kept in a similar temperature control (like salbutamol).

For your travels

Planning in advance

Travelling with a chronic illness can be stressful, but asking questions in advance can help provide a sense of certainty or a chance to plan to protect yourself from uncertainties.

When travelling to friends/family (near or far) ask questions in advance to establish if the place you are going to is set up in a way that would suit any common accommodations you might need to support your wellbeing during your visit. You may consider asking:

    • At what temperature the house usually sits, and is there any form of adjustable climate control.
    • About the use of any fragrance triggers such as bug sprays, room diffusers, automatic insect repellent systems, candles (including citronella), fragranced laundry detergents and toilet deodorisers.
    • If soap dispensers in guest bathrooms have gentle/hypoallergenic hand wash. If not you may consider bringing your own in a travel size toiletry bottle.
    • If you are prone to gastric distress, ask whether there is a less frequently used bathroom you can use only during your visit. Likewise, if you have unexpected spells of fatigue, ask if there’s a room you can use if you need a moment to shut your eyes and recharge.

    When travelling to public places, it’s also important to plan ahead. For example, a movie can be uncomfortable if the air conditioning is too cold, which might cause breathing problems or even trigger a reaction. Restaurant dining can also be less comfortable if the windows are opened, the air conditioning is broken, or the menu has changed for the season.

    If you haven’t been to the cinema or restaurant you’re visiting before, or haven’t been for some time, consider calling or emailing to ask about things like what’s on the menu, thermostat settings and lighting, if there are seating options away from direct air floor, or whether there is indoor or shaded outdoor seating.

    Contact hospitals before travelling

    Hospitals have different rules and policies on matters such as whether and how people can bring in medication from home, and what documentation is needed to verify compounded medications. Failure to comply may result in medication being confiscated, with the administration required to dispose of it.

    If you need specific types of medication or must avoid certain ingredients, remember that hospitals may not have every brand or type. Before your visit, contact the hospital to learn about their medication policies and how to ensure you have what you need. Some hospitals let you check in unopened boxes of commercial medication or bring sealed compounded medication if you have a note from your doctor or pharmacy.

    Honesty and forward planning for your needs in the case of an emergency or planned hospital stay can be a significant benefit, especially in the case that you don’t have a My Health Record. Whether you’re staying at home or on a trip, consider speaking with the local hospital about your needs to ensure you’re prepared with any necessary medications and letters in the event of an admission.

    Emergency survival kit

    Proactive planning in the event of a natural disaster is always better than being reactive. Ideally, you will have an emergency survival kit. These kits should be made in a watertight, insulated container, backpack or roller.

    Remember to check that any spare medications and prescriptions are in date and do not appear to have deteriorated beyond functional use.

    Australians with a My Health Record should also read about how and when emergency access is available. TAMS also provides more information on how to access medications and medical services in the event of natural disasters. Those without My Health Record should print important medical and personal information and store a copy in vehicles, within your emergency survival kit, and with emergency contacts or trusted friends and family who you may seek support from in the case of an emergency or natural disaster.

    Great additional tips

    Tips shared by our community members in a recent TAMS support group include:

    • Drink ice cold water – be sure to keep the freezer stocked with fresh ice cubes and the fridge with cold water jugs.
    • Close your blinds, windows and doors
    • If you don’t have air-con (or can’t cope with it being on as it triggers you) put a bowl or tray of ice in front of your fan

    • Take advantage of the cooler early mornings and late evenings for exercise, outdoor activities and for meal preparation involving cooking

    • Avoid travelling in the heat of the day if possible, or park in the shade and use car sunshades to reduce heat when first entering your vehicle.

    • Trial a cooling shirt or vest or pashmina

    Disclaimer

    TAMS does not provide recommendations, products are listed strictly as examples. TAMS is not affiliated with any company or brand mentioned in this article and will not profit from or receive secondary benefits consequent of purchases.

    Information is general in nature and may not be relevant/appropriate for all individuals in our community. Please engage in independent critical analysis of the information provided as it relates to you to ensure any adjustments you consider support your best outcomes.

    All consumers should read the Australian Consumer Law, Consumer Guarantees, and/or New Zealand’s Consumer Guarantees Act, to be informed of consumer rights and the expectations/responsibilities of businesses in trade and commerce.