Last fall at the Vision of Children Foundation Symposium in San Diego I met Dr. Michael Struck from University of Wisconsin, Madison. Dr. Struck is leading a clinical trial for the treatment of several types of Oculocutaneous Albinism. This trial is looking at the potential benefit of treating patients with dopamine over a four month …
Understanding 20/20 Vision Update
This is a post originally for about 2 years ago, that I thought it would be good to update. People ask me what Will sees, while I can’t give an accurate picture of that, I thought that giving some perspective on the distance he can read would be good. As he is approaching Kindergarten in …
Vision of Children Symposium
Last week I had the pleasure of attending the Vision of Children Eighth World Symposium on Ocular Albinism in San Diego. Researchers from all over the globe attended and presented their research, most of which is in process. It is unique that researchers of varying backgrounds come together like this and share their research before …
Understanding Oculocutaneous Albinism
Albinism comes in two forms, ocular (OA) and oculocutaneous (OCA). In OA, only the eyes or retina are affected by the lack of pigment. With OCA, the eyes, skin and hair all show a lack of melanin pigment. Typically people with OCA have fair to very fair skin and white or light colored hair. They …
Child Awareness
I have recently been thinking about Will’s awareness of his eye condition, Ocular Albinism. Since he was born with it, it is his normal and he probably isn’t aware that his eyes see differently than other people. There was a discussion about child awareness in a Facebook Group for parents of OA/OCA children about when …
People Behind the Eyes – Robert
Interview series with patients and families affected by Albinism Robert is a 22 year old man living in the United Kingdom. He found us through Facebook. How old were you when you were diagnosed with Albinism? Young, my early years, around 1 or 2. Although I think they suspected sooner. What is your most recently …
Understanding 504 Plans
Some children with learning disabilities, mild special needs or other health conditions that are limiting in a classroom setting may need a 504 plan. These children don’t qualify for special education services or plans called Individualized Education Plans (IEPs), but still have difficulty participating in a normal classroom without some accommodations. The term 504 Plan …
Explaining Astigmatism
At the boys’ most recent vision appointment we discovered that Will has astigmatism; Jack does not. I have astigmatism as well, so I can understand first-hand how it can affect their vision. With astigmatism, the cornea (outer covering of the eye) is mis-shapen. For people with normal vision their cornea is round like a baseball, where …
Eye 2 Eye
Two weeks ago the boys had their annual eye exam with Dr. Weiss at Seattle Children’s Hospital. We go each year to see Dr. Weiss as he is one of the nation’s leading authorities on nystagmus and Ocular Albinism (OA). During our visits we make sure no other issues are cropping up and track the …
What does 20/20 vision mean?
We all hear references to 20/20 vision, but what does that really means? I was talking with a friend and realized even I couldn’t accurately articulate it after all we have been through. So here is an explanation. Over time, eye doctors established what “normal” people should be able to see at a distance of …