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.
Friday, March 8, 2013
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
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.
Friday, March 1, 2013
In the Pursuit of Chocolate, I found...
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| Godiva Clam Shell shaped piece of milk chocolate with hazelnet flavored chocolate filling.... yummy. |
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.
Thursday, February 28, 2013
February is...
Wednesday, February 13, 2013
Discussion: Genetic Testing
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| By Jerome Walker,Dennis Myts (Own work) [Public domain], via Wikimedia Commons | Image Wiki | Image File |
Often times when it comes to issues of genetics or DNA we are concerned with paternity or in criminal cases but not when it comes to having children. When I was first diagnosed with Stargardt's I was concerned with how vision loss would affect my ability to be a mother. (There are several wonderful visually impaired moms out there) I wasn't so much concerned about the possibility of passing this disease to my potential children or even on how I inherited the disease myself.
Now Stargardt's isn't the only inherited disease in the world but diseases like it do bring up discussions in family planning and genetic counseling. Many Stargardt's patients are advised to get genetic tests done so they know what form they have and for research. I myself haven't had the test done, but hopefully will so in the future. If you or a loved one has Stargardt's you can check out Asper Biotech's DNA Testing Services.
I just wanted to talk about this topic as a discussion. Just wanted to know if other Stargardt's patients have had the DNA tests done. I also want to know from others how do you think genetic testing will affect people's choices in family planning. Leave your comments below and share this post.
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