Category: Sun/Skin Protection

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.

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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)
Soap

-Dove for Sensitive Skin
-Cetaphil
-Oil of Olay
-Vanicream

Moisturizer

-Aquaphor ointment
-Vaseline ointment
-Vanicream
-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- http://www.uvsungear.com/dar106.html
Solar Eclipse- http://www.solareclipse.com/
Sun Togs- http://www.sun-togs.com/page.home

Home/Auto window tinting and shades
North Solar Screen- http://northsolarscreen.com/index.html

Llumar Window Film and Window Tint- http://www.llumar.com/

Industrial Shadeports- http://www.shadeports.com/

 

 

Other Great Resources
Protect-a-Bub- http://www.protect-a-bubusa.com/index.shtml
One Step Ahead- http://onestepahead.com/home.jsp
They have a variety of products for babies and children, including many for sun protection.

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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.

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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.

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work is licensed under a
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