Friday, March 15, 2013

Artist Yvonne Felix Thriving With Stargardt's

 Photo 1 Attribution: Yvonne Felix Arts | website:

It seems that I keep on finding people with Stargardt's who are some how involved in the arts. Well the trend continues with artist Yvonne Felix who I met via Twitter.
Yvonne is a Canadian public and community artist, an educator, an advocate, wife and a mother of two. Oh and she also has Stargardt's Disease which hasn't stopped her from pursuing her goals. 

eSight Eyewear for Low Vision

The above video is from the AMI (Accessibility Media Incorporated) documentary A Whole New Light and features the ALIVIOS eSight Eyeware glasses.
The video features Julia Lewis who is an executive with Stargardt's Disease. She's visiting with a low vision specialist who is showing her how to use the device.
The eye-ware looks like a pair of goggles but there more than that. They have a camera embedded in them that processes images that can be tailored to the specific needs of their users. In the video Julia is shown a picture of members of her family that are brought into focus for her. With the nature of low-vision its difficult for people to make out details such as those of people's faces.
The Ottawa Citizen wrote an article of another patient Yvonne Felix using the AVILOS eye-ware device. She was able to make out the faces of her two children using the device and even was able to complain about how ugly her carpet was. *smiles* You can read the article at the following link:
What is also interesting about the eSight Eyeware company is that it was developed by someone who is personally affected by vision loss. Conrad Lewis' wife, sisters and himself all have some form of visual impairment. So he combined his experience working in the tech industry with his desire to help improve the lives of those with visual impairment to create this revolutionary company.

Friday, March 8, 2013

International Women's Day: Visually Impaired Women Worldwide

If you caught one of my previous post February Is... I express my love/hate paradoxical feelings toward awareness campaigns. I love them because they do bring awareness to causes but sometimes can further marginalize the groups that they are trying to help. The longer I think about it I'm starting to... dare I say it 'LOVE' them. My love/hate feelings arise from the fact that I can already perceive (in my mind at least) this global society where everyone is treated equally with their differences. Then I look around and realize that this isn't happening for everyone. My logic jumped from straight A to Z without considering all the other letters in between. When I look around a second time the seeds of change are sprouting and still are being planted. Sometimes I forget that CHANGE is a PROCESS not an event. Not everyone who is exposed to awareness campaigns will become a change agent but if they can affect at least one person then the are worthy. Awareness campaigns are the first step in making a better world for everyone. People have to be reminded that just because we take a day or a month to bring awareness for many people this is their daily lives.

Singer Kayley Rose Thriving w/ Stargardt's

When I was first diagnosed with Stargardt's I did a Google search on the disease to better orientate myself to my new circumstance. One of the first sites I came across was a blog called Living And Supporting Stargardt's Disease. It's written by Kayley Rose who is a remarkable person minus her having Stargardt's. She writes about her experience with the disease and how it hasn't stopped her from pursuing her dreams. She's an artist (her Facebook page can be found here), a teacher and is a professional singer even appearing on the British edition of the TV singing competition X Factor. The above video is audio featuring Kayley singing The Beatles song Something. Read about Kayley in her own words here.

If you liked the above post you might also be interested in the following:

*Disclosure some of the links are affiliate based with Amazon or Google and I do recieve a commission if links are clicked.

Thursday, March 7, 2013

I Gotta Go to Rehab... Its Not What You think.

Amy Winehouse famously sang the lyrics "They tried to make me go to rehab and I said no, no, no." in her hit song Rehab. Unlike Amy I acknowledge that I need to go to rehab... not for substance abuse issues but for low-vision. Now many of us who have low-vision will think that it isn't necessary for us to go but we must. Sometimes our pride gets in the way because we might not feel like we have a disability. The reason we feel like we don't have a disability is because of our ability to adapt. I didn't realize for a couple years before my official diagnosis of Stargardt's that I had been engaging in adaptive behavior. But with most people who have some form of macular degeneration our vision is deteriorating and we'll eventually need to adapt our behavior with some assistance.

March Update

Got over the Bump in the Road
If you follow this blog you might remember a previous post A Bump In The Road. At that time I had some difficulty with my health insurance and missed my 6-month follow-up visit with my ophthalmologist. well Tuesday I was able to finally go to my long awaited appointment. I can't give specific details on the exact change in my vision because I have to get the paperwork from my Doc. In April I'll do a side by side comparison between my first visit and this latest one.
What I have noticed is a slight decreased visual acuity in my eyes. I was able to read the first two rows of the eye chart. It was difficult to read the 3rd row though. I was surprised that my left eye is better than my right, I always thought it was the other way around. Also my doctor wrote me a referral to see in his words a "Super Specialist" so look out for future posts.

Another Way for the Stargardt's Community to Connect
Today I created two new communities on Google Plus. I have had the pleasure of meeting many fellow Stargardt's patients on Twitter and Facebook, but I know that everyone doesn't use those social networks. I noticed that Google+ didn't have a strong Stargardt's presence so I decided to create one. The community feature on the social network has its advantages over Twitter lists and Facebook groups. In communities you can better navigate through pasts discussions which eliminates redundant conversations. I made one group that is public so all posts can be searched on Google and I made a private companion support group for people who want to connect with other patients.
Since Stargardt's is a rare disease and patients are so widely spread around the world its vital for us to connect. The groups are open to everyone around the world and their families. 
They can be found here:
The public group - Stargardt's Disease Awareness 
The private group - Stargardt's Disease Support 

Before I go I have to give special thanks to Beth Omansky who is the admin of one of the two Stargardt's groups I'm in on Facebook Stargardt's Central. She created the group a year ago for people who were diagnosed who needed a private forum to get info and support with dealing with this disease. So that's what inspired me to make the Google Plus version so that more people out there can get support.

Monday, March 4, 2013

Nick News: Out of Sight: How Blind Kids See the World

Nick News: "Out of Sight" S1
Get More: Nick News Episodes,Nick News,Nick News Games

Back in January Nick News aired the documentary Out of Sight which gives a brief look into the lives of six kids who are visually impaired. Each child eloquently explains their experiences. The documentary is brief but gives a great overview of showing how technology has allowed them to be independent, what being visually impaired means to them, their dreams and how they handle having a sight impairment in a sighted world. I think this is great for parents of children who have been recently diagnosed with Stargardt's and even adults. Often when we are first diagnosed or have to face any perceived obstacle we focus to much on what we can't do instead of focusing on what we can do.
If you liked this post you may also be interested in reading the following:
Stargardt's Stories
Sami Stoner: Teen Cross-Country Runner w/ Stargardt's 
Inspiring Toddler
Some Misconceptions About Blind People

Friday, March 1, 2013

In the Pursuit of Chocolate, I found...

Godiva Clam Shell shaped piece of milk chocolate with hazelnet flavored chocolate filling.... yummy.
In the pursuit of chocolate last month, I found... no not sweets for my valentine but another overlooked use for my camera. In my post 2012 in Pictures I raved about how much I adore my Canon Powershot ELPH 310HS camera. So what new thing did I find? Well its use as a low vision aid. 
During the holidays back in December we got a box of assorted Godiva chocolates. The box came with a description of all the different chocolate flavors but the print was so small. Stargardt's disease and other forms of Macular degeneration mostly affect central vision which makes reading especially small print difficult. So what I did was I took the picture on the macro setting. Doing so allowed me to zoom in on the picture to clearly read the print. Oh if you were wondering if it tasted any good.... it was delicious.
So have you ever found an alternative use for a product or device you've used. Or what low-vision devices do you use throughout the day, would love to know.