Outside The Box

One of the main purposes for starting this blog was to spread awareness about albinism. When I talk about awareness I mean sending a message, getting attention, and getting people to talk about albinism even if it is in the smallest way. I hope that by doing this the few people who read my blog take those conversations further afield and by continuing on this thread we can create acceptance and inclusion for those people with albinism.  I know, I know this is an idealistic goal but I can only try.

I hear you thinking so how does this relate to the title Outside The Box? Recently my husband and I attended our first preschool parent night at my eldest son’s new preschool. During that meeting, one of the parents gave a short presentation about her and her families new business venture called ‘Outside The Box’. Now, this venture has nothing to do with albinism but it does have everything to do with trying to make a difference, showing our children how we can do that and exposing children to causes they may never have been exposed to.

With that in mind, I wanted to write a little bit about this business venture Outside The Box. The box is a monthly subscription or one-time gift that “is full of things that provide an opportunity to spark creativity, curiosity, and imagination while providing teachable moments on how we can not only talk about connection and community but how we can start to live it in our daily lives”. Elizabeth and her husband Aaron have both worked in non-profit for over twenty years. Her biggest passion is giving back and serving the community and with that in mind, they decided to start Outside The Box.

The box is filled with experiences and crafts to be shared. Each box contains items based on a monthly theme: A wearable item, a book, 2-4 crafts or activities that reinforce the boxes theme, community cards that inspire intentional ways to share Outside The Box, and a spotlight on a different non-profit, community service or give-back company. Also, a portion of each box is donated to the organization of the month. I love supporting local, family businesses and this is definitely a business to get behind.

I often wonder how we show our kids how to be kind, how to give back without just talking about it. We started fostering dogs in hopes that we could show our children what it means to be part of something greater than themselves and also to see what our family looks like with a dog in it. I can’t tell you how rewarding it is, tiring but rewarding and I hope it is something our family can continue to do in the future.

We all preach about the need to be kind, generous and helpful to our children but how often do we practice it in a way that really impacts them?

 

What makes a great pair of sunglasses?

Hilton Langenhoven won gold in the long jump at the Paralympic games. He is a South African athlete and 3-time Paralympic champion who just so happens to have albinism. I noticed in a picture of him carrying his countries flag that he had some awesome sunglasses on and it started to make me think about what makes a great pair of sunglasses. This is a pretty valid question for any person but especially persons with albinism.

These days I can barely go outside at any time of year in full sunlight without wearing sunglasses and I don’t have photophobia. The bright sunlight is too much for me, which makes driving a challenge due to all the squinting.  I compiled a quick list of the top things you should be looking for when buying a pair of sunglasses for you and your children:

  • The fit is important if the fit is wrong UV rays can seep into your eyes and the skin surrounding them.  The lenses should not touch the eyelashes (this is a real problem with kids sunglasses), the frames should not sit way out on the nose and it should line up with your brow. Good fitting sunglasses can also keep out sand and allergens from the eyes.
  • Polarized glasses reduce the glare at the beach, in the snow or out of the water but don’t take the place of the UV protection on their own. They do make it hard to see computer screens, smart phones or dashboards. I cannot live without my polarized glasses, best purchase ever.
  • Don’t be fooled by dark lenses as it doesn’t mean it blocks UV rays. Your pupil controls how much light gets in and when you wear darkened lenses, the pupil opens to let more light in, if your sunglasses aren’t rated to block UV rays, you might let even more light into the back of your eye.
  • Sunglasses should block 99 to 100% of UVA and UVB rays if it doesn’t don’t buy them. Too much UV light can cause cataracts, can destroy the retina and it can even cause tissue to grow over your eyeball.

    Cheap sunglasses doesn’t necessarily mean poor quality but expensive glasses doesn’t necessarily mean better, Beaba, Babybanz, My first Julbo’s and Babiators are some of the sunglasses that have great reviews for children. I think Nash does so well in his glasses because I constantly had him wearing sunglasses very early on, we have tried the Babybanz, the Babiators and My first Julbo’s and he seems to prefer the Babiators they also don’t squish his extraordinary long eyelashes like some of them do. I can say that I haven’t found the perfect pair of sunglasses for him yet if there is such a thing.

    Children with albinism may benefit from a permanent tint in their prescription eyeglasses that is light enough to function indoors. Children with albinism may also benefit from photochromic lenses. These lenses darken to a grey or brown shade when in sunlight and automatically lighten back to clear indoors. I have read conflicting reviews on just how beneficial these are due to the fact that they are activated by the sun’s ultraviolet radiation. A person with albinism will still be affected by glare and bright sunlight even when the ultraviolet radiation may be low.

    Well, who knows maybe one day Nash will be an Olympic medalist (no pressure kid). I think perhaps musical genius since he runs around the house humming his Abc’s, the kid can barely string two words together so I find it pretty impressive, although let’s face it I am biased. I do know one thing for sure this kid won’t be short of a pair of sunglasses.

    Featured Image – black and white image of Nash wearing a white long-sleeved t-shirt and a pair of black Babiators in a gazebo at the park, he is looking at the camera.

 

Albinism and its related syndromes

After seeing a post on Facebook the other day I was reminded that I wanted to write a little bit about the other syndromes associated with Albinism in a bid to spread awareness to parents of kids with albinism. I briefly touched on or maybe mentioned that there are other syndromes that can be related to albinism but failed to provide more information. I will try not to get into the heavy duty medical jargon, hopefully, I can simplify it into something relatable and understandable more for myself than anyone else. What is it they say, if you can read something, digest it and then explain it to someone else then you have fully understood it? Well, that is the idea anyway.

The syndromes are called Hermansky-Pudlak Syndrome (HPS), Chédiak-Higashi Syndrome (CHS), Griscelli Syndrome (GS), Elejalde Syndrome (ES) and Cross-McKusick-Breen Syndrome (COMBS)  all are pretty serious and coincide with the other symptoms related to albinism. All affect lifespan because of the health problems associated with the syndromes.

Hermansky-Pudlak Syndrome (HPS)

  • A type of albinism characterized by a bleeding disorder.
  • Conditions associated with it are an inflammatory bowel disease and pulmonary fibrosis.
  • It’s severity and onset vary greatly.
  • Many physicians have not heard of it.
  • Children with albinism are advised to not take aspirin or products that affect platelet function unless it is certain they do not have HPS.

Chediak-Higashi Syndrome (CHS)

  • A rare genetic disorder that is inherited in an autosomal recessive manner, meaning both parents are expected to be carriers of the abnormal gene.
  • Affects many parts of the body particularly the immune system
  • Most people with CHS have repeated and persistent infections starting in infancy or early childhood.
  • Blood clotting is another problem associated with the syndrome that leads to easy bruising and abnormal bleeding.
  • The nervous system can also be affected, causing weakness, clumsiness, difficulty walking and seizures.
  • If not successfully treated most children with CHS reach a stage known as the accelerated phase.
  • The accelerated phase is thought to be triggered by a viral infection and is considered life threatening.

Griscelli Syndrome (GS)

  • Characterized by unusually light skin and light silvery-gray hair starting in infancy
  • Three types of the disorder have been identified:
  1. Involves severe problems with brain function in addition to the distinctive skin and hair coloring. Individuals typically have delayed development, intellectual disabilities, seizures, weak muscle tone and eye and vision abnormalities.
  2. Involves immune system abnormalities in addition to have hypopigmented skin and hair. Individuals are prone to recurrent infections. They can also develop an immune condition called hemophagocytic lymphohistiocytosis (HLH) in which the immune system produces too many activated immune cells called T-lymphocytes and macrophages (histiocytes). Overactivity of these cells can damage organs and tissue throughout the body, causing life-threatening complications if the condition is untreated.
  3. Hypopigmented skin and hair are the only features of Griscelli syndrome type 3 people with this form do not have any of the other abnormalities or problems as 1 or 2.

Elejalde Syndrome (ES) has many of the signs and symptoms associated with Griscelli Syndrome. Some researchers have suggested they are in fact the same disorder.

I believe testing is now commercially available and insurance can pay for it for Hermansky-Pudlak Syndrome (HPS) but I don’t know about the others. I really only knew about Hermansky-Pudlak Syndrome (HPS) as we were told to be on the look out for any marks or bruising on Nash.

A month ago my husband did notice dark marks all over Nash’s bottom and legs. It just so happened he had his ophthalmologist appointment the following day so I made a point to mention it. After much examination and a lot of rubbing with a wet cloth, the marks seemed to start to fade. She told me to go home and try some more and if they didn’t then get back in touch with her. Sure enough, the marks did disappear and we came to the conclusion that it wasn’t  bruising. I couldn’t for the life of me work out where the marks could have come from. A couple days later whilst out for a walk Nash was eating some freeze dried blueberries, I think he was also smearing them all over himself after I noticed those same dark marks. In the end it turned out Nash’s ‘bruising’ was just marks left behind by squashed blueberries, I was slightly embarrassed I am not going to lie.

As I type this it makes me laugh out loud at the ridiculousness of it all. But I realized no matter how ridiculous it is, it is better to be vigilant and thorough and it pays to mention anything you think may be unusual because these kids need us to be their advocates. They can’t speak up about how they feel at this age. It is up to us to pay attention. No question or concern is too stupid or small.