Products Welcome to the products section of our website, where you will find information and reviews of products used by people with ectodermal dysplasias that have worked well for them. CEDSA does not endorse or promote any of the list products and we do not receive advertising revenue. Due to the variance in severity of skin, teeth, nail and hair issues in individuals with an ectodermal dysplasia syndrome, what works for one person may not for someone else. We welcome your comments, suggestions and reviews! To learn more, click on the appropriate heading below. Cooling Garments There are a wide variety of makes and models of cooling vests, towels and bandanas on the market, but they all operate on the same general principle – to be worn next to the body and keep your core temperature down. Used by athletes, and by people with other medical conditions characterized by an inability to regulate body temperature (like MS), cooling vests are a great investment for those with an ectodermal dysplasia who have limited or no ability to perspire. We have not had any success finding a Canadian manufacturer of cooling vests but we’d love to support and promote Canadian business, so if you know of a company that makes vests right here in Canada, please let us know. If you know of another great cooling product, share and we’ll post it here for others to read! Arctic Heat Cooling Vests The vest we test marketed, and loved, was the Arctic Heat cooling vest which can be custom-made to fit any size adult or child based on chest measurements. Not only is it lightweight (just over 2 lbs, making it great for even young children), it is very easy to use and maintain. The vest contains crystals located in panels, that you activate by soaking the vest in water for 10 minutes. You then put it in the fridge or freezer – on very hot days, we have used this vest when it is frozen solid but it takes a deep breath to put it on! On milder days, wear it cold from the fridge. It is easy to wash! Click here for more product information. To order online, visit www.arcticheatusa.com Supporters of CEDSA receive a 10 percent off discount, through contacting us for the coupon code. CEDSA appreciates the vest donated by Arctic Heat for testing purposes, which we then donated to a CEDSA supporter through a draw. CEDSA does not receive any monies or compensation from Arctic Heat. Pictured here on the left is a custom child’s vest and adult blue vest. Make Your Own Cooling Vest Cooling vests ARE expensive, so making your own vest might be a more cost-effective option.Kim, a CEDSA supporter, whose 11-year-old son Kyle has XLHED, created her own cooling vest. She bought a few of the head bands that have the beads in them (the ones that swell up in the water and stay cool for hours, see below under Other Cooling Products). She brought them seamstress and asked her to sew the beads into a vest. If you have any questions on the vest, or tips on staying cool while playing sports, Kim has offered to answer your questions through CEDSA. Other Cooling Products Along with vests, there are also smaller, less obtrusive ways to keep yourself cool during physical activity or hot days. Lee Valley Tools, a Canadian company founded by Leonard Lee, a great Canadian entrepreneur, has two options that you can order online – both under the gardening section. Cooling Towel: This towel retails for around $10.00 CDN. It works through evaporative cooling. The towel absorbs water and as the water evaporates, it cools you. It is advertised as lasting up to two hours. We haven’t tried it; let us know if it works for you. Click here. Cooling Bandana: This towel also retails for around $10.00 CDN. It works like the cooling vests;- it is a cotton bandana filled with gel beads that absorb the water and stay cool by keeping your neck moist and evaporation helping you cool down. It also doesn’t drip. Click here. We have also seen a similar product at SAIL (a sports and outdoors store, with retail outlets in most urban Canadian cities and online ordering), but only during the summer months. Vest Exchange CEDSA is setting up a vest exchange. If you have a vest your child has outgrown, we will see it gets to a good home. Currently we have a child’s size 28 ” chest measurement available. Donations are also accepted! Skin Care Skin Care Maintaining healthy, eczema and rash-free skin can be a difficult task with ectodermal dysplasias but there are some products on the market that are scent-free, hypoallergenic and made for sensitive skin that do provide some relief. There are also some anecdotal information of various things we have tried that have worked for us. Aquaphor Original Ointment: This product is for dry, cracked or irritated skin and can be used on raw skin, for atopic dermatitis and for chapped lips. The product is promoted as fragrance-free, preservative-free and non-irritating. In the past, it has been difficult to find in Canada but the website, www.well.ca, will ship it anywhere in the country. CeraVe Moisturizers and Cleaners: This is an entire skin care line that replenish and retain moisture. The product contents are patented, and are promoted to restore moisture and form a protective layer over the skin’s surface to prevent moisture loss. Again, it may not be available in Canada but when we find a Canadian supplier or someone who will ship to Canada, we will post that information. Hair/Scalp Care Hair/Scalp Care Fine, brittle, hair that is slow to grow and lightly pigmented needs extra attention, and gentle care. Again, with the surgence of scent-free, hypoallergenic products on the market, there are options that make your hair easier to manage and appear thicker. Dental Care Dental Care With missing teeth, malformed or misshapen, and/or prone to decay, dental care is the most challenging, and financially costly aspect of treating most ectodermal dysplasias. CEDSA is building a database of qualified, knowledable dental experts in the treatment of ectodermal dysplasias for our supporters to access. COMING SOON!