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Summer and mast cells

Many of us find heat and humidity to be a big trigger for our mast cell diseases. As we navigate summer with our mast cell conditions, it is important to plan ahead to help minimise your reactions to heat.

TAMS committee member, Jess Perlibachas, has developed a comprehensive list of tips, tricks and products that may help you. These are broken down into four useful categories:

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

As per everything with a mast cell disease, please personally consider each tip, trick and solution. These are not recommendations and TAMS does not have any affiliations to any product recommended.

What else do you do to keep your nasty masties at bay during the heat?

If you have a suggestion you would like us to add to the list, please email info@mastocytosis.org.au

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.

  1. Smoothie kits

Smoothie kits are a good way to ensure easy nutrition on hot and/or flared days. Create a few different mixes of your “friendly fruits” (fresh or frozen) and stash them in reusable freezer safe bags.

For a more nutritionally complete meal add protein powder, ground flaxseed, and spinach. Those needing to avoid bananas due to histamine consider trying frozen cauliflower or pumpkin (frozen raw or cooked) for bonus nutrients and a richer consistency – ideal for smoothie bowls.

Reusable freezer bags:

Protein Powers (pick a type that suits your dietary restrictions)

Cooling your face

Using children’s/mini gel-bead ice packs to help soothe hot flushing and itch anywhere e.g., backs of hands and ears. You could also use face/ice/cryo rollers (stored in the freezer between use) to promote circulation, boost stimulation, promote lymphatic drainage and reduce swelling when used from the centre of the face in an outwards motion.

Cooling towels

Cooling towels are often used by endurance athletes and work by directing heat away from the body. They only need to be damp to provide their evaporative cooling effect (while still helping to keep you dry), however, you can also pop them in the fridge before activity or for flares to help intensify their effects.

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 to remove pollutants, and dust, (a food source for mould). To maintain or improve the energy efficiency of air conditioners, and improve airflow and quality, review the system/unit manual and establish how often you need to wash, vacuum or replace the filters, or filter pads.

Many manufacturers suggest that filters should be cleaned every few weeks, but how often it is truly necessary will likely depend on how often you use your air conditioner, the climate you live in, and any excessive environmental pollutants such as pollen and smoke etc.

You may also consider taking this time to set up a reminder schedule for replacing or cleaning other key filtration systems within your household. These may include rangehood filters, bathroom exhaust fans, washing machine filters and pumps, dryer filters and dishwasher filters. It may also be a good time to deep clean your top loader and front loader washing machine.

Controlling humidity in your home

The best chance of avoiding mould in the home is to keep the humidity level as low as possible, and no higher than 50 per cent as often as possible. On days with good air quality and low humidity, if it is safe for you to do so, open doors and windows to bring in the fresh air – even having a window cracked open slightly can help. More information on the air quality in your region can be found on your local government website. Information on humidity levels is available via the Bureau of Meteorology.

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

  • Consider getting a hygrometre
  • Buy dehumidifying plants
  • 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 with evaporative cooling, consider turning the water off/running the fan only on high-humidity days. You should also ensure that ample doors and windows are open when the pump is on, and that rooms vents are closed off that doors are shut in rooms not requiring cooling, and that the system is generally working properly.
  • Buy a dehumidifier

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/end 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
  • In the case of air conditioning keep the doors and vents closed in any room that won’t be used. This will limit the overall area your system is servicing and speed up how quickly the air is cooled. This is particularly relevant for those with single unit cooling.
  • 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 safe if using a metal bottle), 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).

Store your medication in a low-humidity, temperature-stable location. The bathroom cabinet, a common choice, is actually heavily recommended against given temperature fluctuations (hot water and bathroom heat lights) and humidity often results in medication degrading more quickly. Most medicines should be stored below 25°C, out of the sun, and not stored in the fridge unless advised otherwise on the label.

It is best to review commercial medications datasheets and speak with your Pharmacist or Compounding Chemist about how to best store your medication to preserve its integrity throughout anticipated heat and humidity in the months to come.

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:

  • Ask what temperature the house is cooled too. (“Say what you need” if you know the temperature is too high or low for you.)
  • Ask about the use of any fragrance triggers such as bug sprays, room diffusers, automatic insect repellent systems, candles (including citronella) and toilet deodorisers.
  • Ask 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 or unexpected faint spells ask if there is a less frequently used bathroom only you can access during your visit and if there’s a room you can use if you need a moment to shut your eyes and recharge.

When travelling to external venues that are operated by businesses similar questions are often appropriate. A trip to a movie theatre can easily be ruined for many of us when we’re hit by arctic-level air conditioning resulting in respiratory distress or temperature-induced anaphylaxis. Similarly, a trip to a known/safe cafe/restaurant can be ruined if they’ve decided to open up windows, their air conditioning isn’t working, or they’ve changed the menu to a seasonal one.

Don’t hold back on asking questions like what temperature a cinema is cooled to, what’s on the menu and how a restaurant is set up (i.e., is there indoor seating or suitably shaded outdoor seating) and what’s on the menu. Afterall you’re typically paying for visits to such places!

Contact hospitals before travelling

Hospitals have different rules and policies on matters including if and how people can bring in medication from home, including what documentation is needed to verify compounded medications. Failure to comply

Those who are only able to take certain varieties of medications confidently, or need to avoid excipients should be mindful that not all hospitals carry every kind/brand of medication. If you’re planning a trip away, consider contacting the Hospital to establish their rules and any ways to work around them honestly and with hospital support in case of an emergency admission, especially in the case that you don’t have a My Health Record.

Staff within the Emergency Department may be able to work with the hospital administration to support you by providing documentation about accommodations you need, including bringing in medications from home, medication/excipient allergies or any other you have requirements in the case of an admission.

Emergency survival kit

This year in Australia we’ve already encountered several natural disasters, unfortunately with more currently developing and predicted throughout the summer. In planning your best outcomes in the case of a natural disaster it is best to be proactive rather than reactive.

Ideally, you will have an emergency survival kit. It is suggested these kits should be made from a watertight, and insulated container, backpack or roller. Remember to check that any spare medications and prescriptions contained within are in date and do not appear to have deteriorated.

Those with My Health Record should also read about how and when emergency access is available.  TAMS also has more information about how to access medications and medical services in the case 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.

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