Guest Post: Ehlers-Danos Syndrome – TruKid and the Ultimate Skin Sensitivity
Today we have a visitor on our blog, who happens to be a TruMom! She kindly shares with us her and her daughter’s skin sensitivity adventure.
TruMom Marianne K. Ozmun works in Diversity and Inclusion for Washington State Government. She, her spouse, Jody, and daughter Allie all love trekking around the Pacific Northwest “roughing it” in their new totally tricked out travel trailer. In her “free” time, Marianne is a freelance writer as well as an art teacher specializing in culturally-based art education. The whole family are big-time collectors with collections of outer space action figures, tin lithograph toys, and pez dispensers.
“TruKid is a whole lot more than just a good smelly shampoo for my kid.”TruKid products happen to be a lot more than shampoos and body washes for our family. For our daughter, who has a genetic collagen defect, anything that goes on to her skin can either be harmful or healing. TruKid happens to be healing. As parents, we know all of the quirks and traits that make our kids uniquely our kids. We will peel apples, cut the crusts off breads, and check for monsters under beds just to make our kids a bit more comfortable. Many kids if not most have some measure of sensitivity toward certain things, picky eaters loathe certain food tastes and textures, kids with sensitive eyes squint and avoid the sun, and many children have skin sensitivities. I know plenty of parents who cut tags out of clothing and make sure that not a single wrinkle is left in little socks. But what if your kid had all of the sensitivities and what if “growing out of it” and simple behavioral techniques didn’t work in helping to desensitize your child. What if the physiological things that normally protect humans from heat and light and abrasion and movement were lacking? That is what happens for children with Ehlers-Danlos Syndrome. A genetic flaw in collagen means that everything that holds us together and keeps the harshness of the world out, is compromised. My daughter and I share this small but significant flaw in our DNA. Thankfully the particular type we have is not life threatening but it is quality-of-life threatening. We have gone on leisure trips with other families and the difference between our daughter and other children is quickly evident. Hotel rooms are always a treat for kids, our daughter is no exception but hotel bed-sheets have the unfortunate effect of removing the skin from my daughter’s points of contact with the bed. We have learned to travel with lots of fleece to cover any of these beds so she doesn’t suffer skin damage. When we bought our RV, my daughter excitedly climbed into an upper bunk only to climb down and say, “Mom, the bed took the skin off my knee.” We learned when she started school that seams in blue jeans wore holes into her legs. Our little fashionista wears mostly leggings and fleece; jeans are a less frequent fashion choice because while they look great, they don’t feel so good. We also learned that bath and body products can be unbearable. Soaps or bubble baths that sting some kids’ skin would leave big red welts all over our daughter. She happens to be hyper-sensitive to all kinds of sensory stimulus so slimy feeling lotions and super perfumy shampoos were awful for her. One day, while on one of our many jaunts to find bath and body products that were toxin-free, actually worked, and wouldn’t burn or otherwise torture our daughter, we happened to find TruKid in a natural grocery store about 80 miles from our home. We were so happy with the ingredients and the fragrance but the real difference was in way they impacted our child’s body. TruKid products got her squeaky clean without any burning, no welts or redness, and surprisingly she loves the fragrance and doesn’t mind the feel (most of the time). We have since purchased nearly every TruKid product available. This summer she was slathered in TruKid sunscreen every morning and the lotion helps us to keep skin chafing and bouts of Eczema under control. We keep one set of shampoo, conditioner, body wash, and lotion at home, one in our travel trailer, and one in her gym bag at all times. The Hero Stick got our whole family through summer bug bites and now TruKid just released a new Eczema cream, so we are prepared for this winter. TruKid products have become a whole lot more than bath and body products to my family, they have become a therapeutic approach to my daughter’s self-care. No kid wants to use something on their heads or bodies that hurts or feels gross or smells badly. This summer, we had a couple of occasions where we ran out of sunscreen and had to use another “all natural” product briefly. On both occasions, my daughter crinkled her nose and said, “I like my kind better.” My partner and I got used to making the 160 mile round trip to the store I mentioned for TruKid products and when they suddenly stopped carrying TruKid, I was so upset. We tried a number of other products that are marketed as SLS, phthalate, and toxin free but invariably they didn’t work. The shampoo left our daughter’s hair feeling like it had a film on it and she hated the smell. The other lotions were terribly greasy and we found our daughter trying desperately to wipe it off on her clothing or towels. After searching for another retailer, we found and began ordering TruKid online. Honestly, I cannot imagine having my daughter using any other bath and body products than TruKid. These products are the only products my daughter will use and even though she is almost nine now, they don’t feel like “baby” stuff to her. I have had an opportunity to learn quite a lot about the TruKid company and its founder. I have found the TruKid staff to be honest about everything in their products and their processes and they have been incredibly generous in helping us find solutions to my daughter’s skin problems. So I may not be the mom who always cuts the crust of my kid’s sandwich but I will do just about anything to help a little girl living with a rare genetic disorder to look and feel like a normal kid and to literally be comfortable in her own skin. I honestly do not think I can do that without TruKid products. So if it’s good enough, and safe enough, and gentle enough, and effective enough for my super sensitive kiddo, I am guessing these products are a great pick for just about every other kid, including yours. Opinions expressed in this article belong solely to the writer and are not necessarily that of TruKid’s.