Many individuals with ichthyosis, particularly ARCI-lamellar ichthyosis, do not sweat normally. The thickness of their skin and the scale does not allow their sweat to reach the surface of their skin and cool them effectively. In very hot and humid weather they are at risk for overheating, heat exhaustion, and heat stroke. 

FACT:  People with ichthyosis do have sweat glands.  However, the thickness of the skin and the scale does not allow sweat to reach the surface of their skin and cool them effectively; so many individuals with ichthyosis do not sweat normally and suffer from overheating.

Strategies for avoiding heat emergencies

 

  • Limit physical activities and outdoor activities to the coolest parts of the day, before 10:00 a.m. and after 2:00 p.m.
  • If possible, seek out air-conditioned spaces during the hottest part of the day, 10:00 a.m. to 2:00 p.m. If you cannot be in air-conditioning, use a fan to keep air circulating around you, stay out of the sun, and rest.
  • Drink lots of fluids, more than you think you need. Avoid caffeine and alcohol, which can be dehydrating.
  • Use a pool, wading pool, lawn sprinkler, bathtub, or shower for frequent cooling dips.
  • Wear a hat and sun protective clothing when you do need to be outdoors. Loose natural fiber clothing in light colors will help you feel cooler than dark, tight-fitting, synthetic fiber clothes.
  • Use cool packs, cooling scarves or other cooling products, and spray bottles of ice water to cool down.

 

Early Symptoms of a Heat Emergency
  • Dizziness
  • Fatigue
  • Muscle cramps
  • Nausea
  • Thirst
  • Feeling weak and light-headed

Later Symptoms of Heat Exhaustion

  • Cool, pale skin
  • Large pupils
  • Headache
  • Nausea and vomiting
  • Irrational behavior
  • Unconsciousness

                                        Symptoms of Heat Stroke                                        

  • Dry, hot and very red skin
  • Fever
  • Dark urine
  • Extreme confusion
  • Rapid, shallow breathing
  • Rapid, weak pulse
  • Small pupils
  • Seizures
  • Unconsciousness

First Aid for Heat Emergencies

  • Remove person from the heat to a cool place where they can lie down with their feet elevated about 12 inches.
  • Apply cool wet cloths (or cool water directly) to the person’s skin and use a fan to help the water to evaporate and lower their temperature. Place cold compresses on the neck, groin and armpits. Do not use alcohol rub.
  • Give the person cool water to sip, Gatorade or slightly salted water (1 teaspoon salt per quart of water). Give ½ cup every 15 minutes. Do not give salt tablets, alcohol or caffeine.
  • Seek medical help immediately if the person shows signs of shock (bluish lips and fingernails, and decreased alertness), has a seizure, or loses consciousness.

Sun Protection and Cooling Products

02-Cool
1415 N. Dayton Street
Chicago, IL 60642
312.951.6700
www.o2cool.com


Arctic Heat USA
Cooling vests, neck wraps, cooling tubes, cooling caps
246 A. Third Avenue
Westwood, NJ 07675
201.829.0026
www.arcticheatusa.com

Coolibar
2401 Edgewood Avenue S
St. Louis Park, MN 55426-2860
952.922.1445
www.coolibar.com

DB Mist Systems
Personal Misters
952 Coral Kui Court
Gilbert, AZ 85233
480.926.2499
www.dbmistsystems.com

Gempler's
Hat and Caps, Cooling Hats & Vests, Fanny pack w/ water bottles
P.O. Box 44993
Madison, WI 53744-4993
608.662.3301
www.gemplers.com

Glacier Tek, Inc.
Cooling Vests
P.O. Box 120642
West Melbourne, FL 32912-0642
321.676.7799
https://glaciertek.com/

Heat Relief Depot
Personal Cooling Products
8300 Business Park Drive
Port St. Lucie, FL 34952
877.879.1450
www.heatreliefdepot.com

Misty Mate
Personal misters & Cooling Products
955 N. Fiesta Boulevard
Suite 1
Gilbert, AZ 85233-2807
800.233.6478
www.mistymate.com

Polar Products
Body Cooling Vests and Accessories
3880 Cavalier Trail
Stow, OH 44224
800.763.2423
www.polarproducts.com

Pro-Kold Corporation
Cooling Vests
2607 N. Moore Avenue
Moore, OK 73160
405.237.1688
www.articwraps.com

Sta-Cool Industries, Inc.
4287 NW 76th Court
Ocala, FL 34613
866.782.2665
https://stacoolvest.com/

Sunday Afternoons
Sun Protective Clothing
716 South Pacific Highway
Talent, OR 97540
www.sundayafternoons.com

TechNiche
Cooling Vests
1261 Liberty Way, Suite A
Vista, CA 92008
760.476.0654
www.techniche-intl.com

Wallaroo Hat Company
Sun Protective Clothing
1880 Flatiron Court
Boulder, CO 80301-2850
303.494.5949
www.wallaroohats.com

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

 

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