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A Publication about Visual Impairments and Deafblindness for Families and Professionals

By: Andrea Wade, Parent

Abstract: Learn about this family’s attendance at the recent conference of the National Organization for Albinism and Hypopigmentation, as well as what they learned about albinism and life in general.

Key Words: Albinism, conference, friend

My name is Andrea Wade. My husband, Sean, and I have a 7-year-old daughter, Elizabeth, who has albinism. Albinism is an inherited condition in which people have little or no pigment in their skin, hair and/or eyes. They have inherited genes that do not make the usual amount of a pigment called melanin. About one in 17,000 people in the U.S. have some type of albinism. Although Elizabeth was born with a head full of white hair, we didn’t learn that she had albinism until she was about six weeks old. We understood that we needed to take necessary precautions to protect her while she was out in the sun by wearing sunscreen, sunglasses and protective clothing. One issue that we were completely unaware of is that people with albinism always have a visual impairment and it is not something that is correctable with glasses or surgery. The degree of visual impairment varies, but many people with albinism are considered legally blind. At our most recent visit to the eye doctor, Elizabeth’s corrected vision was 20/200.

Since learning that Elizabeth has albinism, we became members of a wonderful organization called NOAH (National Organization for Albinism and Hypopigmentation). NOAH hosts a national conference every other summer and this past July was our third time attending the conference. The conference this year was in Pittsburgh and our whole family attended. In addition to Elizabeth, we have a 5-year-old son, Joseph, who does not have albinism.

The NOAH conference consists of various workshops for parents of children with albinism and adults with albinism, as well as a number of planned social activities. One of the social activities we signed up for was spending the evening at the Carnegie Science Sportsworks Center. NOAH had reserved the 12,000 square foot building for the evening and attendees could clock how fast they can run the 10 yard dash or throw a fast ball, try a rock climbing wall, see how high they can jump, and become a human yo-yo just to name a few! The kids and adults had a blast trying out all of these fun activities. Now, I have to admit, I had one of those parent fail moments to my visually impaired child. Elizabeth was standing in line for her second chance at becoming the human yo-yo and Joseph was tugging on my pant leg begging me to race him in the 10 yard dash. I agreed to race him and without even thinking, walked to the small track area (about 50 feet away). You know where this is going. Elizabeth finished yo-yo-ing herself and then couldn’t find me in the place where I had been, and I obviously forgot to tell her where I was headed. We eventually reconnected, but she was in tears because she couldn’t find me and I was angry with myself for being so absent minded. Lesson learned. It reminded me how much we take our vision for granted, as well as the importance of essential communication with our kiddos.

picture of a boy and girl in sunglasses
Photo of Elizabeth and Joseph outdoors wearing sunglasses

 

Although this was our third conference, I still find myself wanting to attend multiple sessions that are being presented at the same time! I was drawn to the scientific topics this year. There was information on the latest research in albinism. There are actually seven different types of albinism and one research question asked, “Is visual acuity different in different types of albinism?” The information presented found that yes, it is different (in the 15 and older age group) when different types of albinism are compared. Also, since melanin is needed for development of the very back part of the eye (the fovea), could improving melanin synthesis during the time of eye development also then improve vision? Now, the pilot study involves five adults and the goal is to increase melanin production. But ultimately, the scientists are hoping to find a treatment that could be given to children during foveal development that could improve their vision. Another session I really enjoyed was “iPad Apps for Education.” Clearly, we live in a technological world and although some are resistant to how things are changing, technology advances are so useful to those with visual impairments. The presenter talked about “Genius Scan” which allows you to scan a worksheet on your iPad, open it in “Goodreader” or “Notability,” complete the assignment (without having to strain to see that tiny print!) and then print it out or email it back to the teacher. “Notability” also allows a student to organize their work in folders which seems like a rather important task to master as our kids get older. I left this session feeling amazed at what people come up with and comforted knowing Elizabeth will have a varied group of “tools” to help her navigate school and work.

picture of three girls hugging
Photo of Elizabeth and two other little girls with albinism

 

Often times, what kids are learning is more important than what the adults are finding out about in their sessions. I love asking kids about their experiences to find out what impressed them most. I thought I would include some Q&A from Elizabeth and Joseph and get their insights into our trip!

  • Q: What was your favorite part of the NOAH conference?
  • Elizabeth: "Getting to see Sadie, my friend with albinism. She is from Canada."
  • Joseph: "I got to see new people."
  • Q: What’s one thing you learned at the NOAH conference?
  • Elizabeth: "That some people are there because they know people that have albinism. Not everyone at the conference had albinism."
  • Joseph: "You should treat others the way you want to be treated."
  • Q: What was your favorite part about the trip?
  • Elizabeth: "There was a ballroom in the hotel and we got to have a dance there Saturday night."
  • Joseph: "We brought snacks on the airplane."

This NOAH conference was the biggest yet with over 1000 people in attendance. Each conference gives us new insights and valuable information. In addition to the sessions, some of the best parts of attending are the casual conversations while at breakfast or lunch, as well as the party on Saturday evening. It is so much fun to watch the kids dance and enjoy themselves. Sometimes, I think, wow, if we didn’t have Elizabeth, we wouldn’t have met all of these great people, or had any of these experiences. Honestly, I knew nothing about albinism before Elizabeth was born. I didn’t even know the word “albinism.” Knowledge gives us a new perspective. It helps us grow in ways we didn’t know we could grow! One of the facilitators of the mother’s workshop I attended talked about how she tried to make everything with her kids an “adventure”! Even the most mundane and what might be difficult activities (like sometimes having to eat lunch by yourself in the cafeteria) became adventures. That really struck a chord with me. Our goal is to look at those daily routines that can be a struggle and turn them into something fun, to put a different spin on it. I hope you can take a step back, see all that is good and enjoy your adventure too!

picture of children in front of a skyline
Photo of Elizabeth and Joseph in front of the skyline of Pittsburgh