New Sun-Protective Clothing

I was browsing through the catalog I received yesterday and found that One Step Ahead has some new sun-protection items.

I am definitely going to get the outfit in the first picture below. We bought last year’s version, which was actually a one piece, but still similar. I’m pretty sure it is made out of the same material. It is VERY light weight and breathable. It doesn’t get hot and sweaty and sticky like t-shirts do during the hot summer months in our extreme Kansas humidity. One Step Ahead describes the clothing as “cool and comfortable, breathable, quick-drying, and antimicrobial. It is UPF 50+ protection.

UPF stands for Ultraviolet Protection Factor and is used to measure the protection factor of clothing like SPF is used to measure the protection factor of sunscreen and make-up.

The outfit in the second picture is really more of a wetsuit. It has the same UPF protection and is also salt, and chlorine resistant. They have a lot of other sun-protection clothing items in their Sun Smarties collection which I LOVE.

I also found a really neat outdoor sunshade/tent. That is the 3rd picture below.

You can find all of these online at One Step Ahead. Just do a search for “Sun Smarties” to find the clothing and “shade” to find the tent.
If you go to the One Step Ahead online store through I-Give, then 4% of your purchases is donated to NOAH and it doesn’t cost you anymore. You can get to the I-Give website from the link below.





Sun Protective Clothing

This pink outfit in the first picture and the brown pants in the second picture are made of Solarweave fabric. It provides an SPF 30+ and is very loose and breathable, and just really convenient. It ended up being a lot less expensive than the one-piece sun-protective outfit she has, that is made out of the same type of material. You can see that out-fit in my last post here: Laugh it Off.

We purchased one yard each of the fabric in pink, tan/brown, and white for a total $30. My mom, who is an awesome seamstress, was able to make Lyra a shirt with a hood and a pair of pants out of the pink, 2 pairs of pants out of the brown, and 2 shirts out of the white, one with a hood and one without. That ONE one-piece sun protective outfit retails for $40. Obviously, if you know someone who can sew, buying the fabric by the yard and making the outfits, is a much better deal.
Lyra wears these A LOT. It’s much easier to throw these on her to go run errands than to slather on half a bottle of sunscreen. For now, as you can see in the picture below the pants are long enough that they even cover her feet. 🙂 I know it kind of looks like she has some GINORMOUS long legs, but really my mom just made them a little extra long so Lyra wouldn’t grow out of them as fast. I told my mom she should start her own line of inexpensive sun protective clothing, but so far she doesn’t seem too interested. Here is the website where we purchased the fabric: Sungrubbies. They have the fabric in pink, blue, tan, black, and white. If having outfits made isn’t an option, you can find several websites/retailers of sun-protective clothing in the Resources section. They can provide just as much sun protection and can be a handy alternative to sunscreen, AND, you don’t have to reapply these every 2 hrs.

Pink sunsuit

Wearing brown sun protective pants

Creative Commons License

work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Sun and Skin Protection

Product Recommendations, Tips, and Resources

Less is more when it comes to the number of ingredients in skin care products.

– Ingredients like zinc oxide, titanium dioxide or Parsol 1789 offer the best sun protection.
– Recommended brands include Vanicream SPF 60, Neutrogena SPF 55 or 70, Neutrogena Sensitive Skin SPF 30, and Total Block. (Although Total Block needs to update their website with an accurate and more current description/definition of albinism)

For dry skin care (recommended by dermatologist)

-Dove for Sensitive Skin
-Oil of Olay


-Aquaphor ointment
-Vaseline ointment
-Eucerin cream
-Cetaphil creamDetergent

-Tide Free
-Cheer Free
-All Free and ClearDiaper rash

-Triple PasteTips from Dermatologist
-Sunscreen should be worn on sunny and cloudy days and all year around.
-Reapply during prolonged sun exposure or after swimming or heavy sweating.
-Avoid sun exposure during 10AM and 4PM.
-Wear a broad brimmed hat.
-Wear sunglasses.
-Wear sun protective clothing. (See list below)
-Protect skin from sun coming through windows at home and in your car. (See list below)
-Sit in the shade whenever possible.

Sun Protective Clothing Resources
UV Sungear-
Solar Eclipse-
Sun Togs-

Home/Auto window tinting and shades
North Solar Screen-

Llumar Window Film and Window Tint-

Industrial Shadeports-



Other Great Resources
One Step Ahead-
They have a variety of products for babies and children, including many for sun protection.

Creative Commons License

work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

First Visit To a Dermatologist

On March 27th, Lyra had her first visit with a pediatric dermatologist. The doctor provided a lot of great advice and suggestions and showed a lot of expertise in the areas of skin care and sun protection for a person with albinism.
However, I was extremely disappointed by her lack of general knowledge regarding albinism. She asked me how I knew Lyra inherited albinism from me and my husband.
Does she not know albinism is a genetic condition and the ONLY way Lyra could get oculocutaneous albinism is by inheriting it from me and my husband because it is an autosomal recessive gene. The only type of albinism that isn’t autosomal recessive is a form of ocular albinism that is X linked. You can’t “get” albinism any other way…its not leprosy.

Also, she asked me if Lyra had any hearing problems, because “sometimes people with albinism have hearing loss.” WRONG!!!!!! This is SOOOO incorrect. I wasn’t sure at the time she said this, but I’ve done my research. The only condition even related to albinism, that does include hearing problems, is called Waardenburg syndrome. In the definition, it is referred to as “partial albinism” and it is an AUTOSOMAL DOMINANT condition. There no forms of oculocutaneous albinism in which hearing is affected.
If this dermatologist did happen to treat a person who had albinism AND hearing loss, then the hearing loss was caused by some other condition…not the albinism.
Parents of a child with albinism have enough things to worry about without someone telling them their child may have hearing loss.

Lastly, she referred to Lyra as having pink eyes. Now I know sometimes when the bright lights are shining directly into them, they my APPEAR pink, but Lyra has BLUE EYES! This is a huge pet peeve of mine. There is no such thing as pink iris color.
She is a doctor and should know this.

She did refer me to NOAH, which I am already a member of, but I think she needs to visit their website and do a little homework.

Creative Commons License

work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

I Hate Sunscreen

Putting sunscreen on Lyra so much is a big pain in the butt. Only because I’ve been lazy and careless in the past. I have never been real consistent in putting sunscreen on my oldest two children or myself. I should have been. If I had put sunscreen on them more regularly, it wouldn’t seem like I was constantly putting it on Lyra now.
I would never take her out without sunscreen. I know I just need to make it a habit. Right now its still an annoyance and I’m being selfish.

Creative Commons License

work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.