Wednesday, October 24, 2012

Toddler and Her White Cane

I came across this video a few weeks after my diagnosis. I think this video of a toddler learning to use her white cane to navigate her surroundings is awesome. If she can do it then why wouldn't I when the time comes. Most of the comments on the video are for the most part positive but a few were filled with pity. The video shouldn't provoke feelings of pity, this little girl is being given independence. It would be pitiful if the video played only to the fact she couldn't see, but it doesn't. Just because someone is impaired in one area in their life doesn't mean they aren't capable in others.

Wednesday, October 3, 2012

Stargardt Stories

"It's not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change. - Charles Darwin.
Image created by Mia Pallas found on 
When I was first diagnosed with Stargardt's I stumbled upon the site Under the tab Living With Stargardt's they had compiled stories of various people with the disease from all around the world. It was so comforting to read about people's experiences having similar fears yet still pulling through. It brought into focus that I'm not alone with this affliction. I'm not exactly sure if they are still excepting stories but you can contact them at if you yourself or a loved one wants to share your experience.

UPDATE: If you would like to read more Stargardt Disease related blogs I added a a new page Stargardt Blogroll which can be found on the header bar above or to the sidebar to the right. Its that thin vertical line to the right of the page. If you put your cursor on it magical things happen. Ok, well maybe not magical things but it will give other links to interesting pages. Feel free to recommend any other blogs in the comments.

Wednesday, September 12, 2012

The Perils of the Peculiar Pursuit of Perfection

I might have to copyright the title of this blog post with its amazing or ostentatious display of acrobatic alliteration. I'll stop patting myself on the back and get on to what I wanted to say. I haven't posted anything close to a month and that is due to several reasons. No need to worry about my vision its pretty much hanging around at 20/200 - 20/100. From time to time I just need to disconnect from the internet and that's what I've done. I'm very active trying to manage 3 blogs, 2 Twitter accounts, Facebook and just keeping up with social media in general. This is also on top of having a life outside of the internet too.

The main culprit in my absence is trying to be perfect. Wanting this blog to be something more than me, when it really should just be me. In saying it should be "me" I mean I need to stop putting unrealistic pressure on myself to succeed or be the best. My first posts on this blog came from what I was feeling and wanting to share about my journey. When I put pressure on myself I become blocked and riddled with anxiety which in turn puts everything on hold. I have been done this road before when I started my sweepstakes blog on tumblr. I wanted everything to be perfect but realized if I just let my expectations move out the way everything would be fine. So I'm going to let this blog evolve. In time it will be what I want it to be but I need to let it crawl before it walks. This is why pursuing perfection is peculiar because it really doesn't exist and you'll have many perils in trying to find it.

If you struggle with perfectionism you might like to check out the following article: Just Perfect: 5 Signs You Might Be A Chronic Perfectionist

Friday, August 10, 2012

Stargardt's and Me

So Stargardt's Disease and I have been together for 4 months now, we were formally introduced on April 02, 2012 and my life has never been the same. I had some brief glimpses of Stargardt's before we met with difficulty reading small print and recognizing people from 20 feet away.
Having this disease for me is like beginning a new relationship you spend time learning about your situation and you start to make room for this new experience in your life. The only difference is when my relationship with Stargardt's goes sour I can't simply break things off. I can't say "We just don't see eye to eye." (lame attempt at a blind joke) So I'm in this for the long haul.
Last week I finally got around to writing a post that's a fact sheet about Stargarst's Disease which you can read here. So I figured the next post I wrote should be about my relationship with the disease. Just doing research and talking to others everyone has a different experience with this affliction.

So this is what's going on with me...and Stargardt's:

Tuesday, July 31, 2012

So What is Stargardt's Disease?

So here are some quick facts about Stargardt's Disease.


  • Stargardt's Disease also sometimes referred to as Fundus Flavimaculatus is a family of rare inherited retinal eye diseases in the form of juvenile Macular Degeneration.
  • Macular Degeneration or Dystrophy is a progressive loss of central vision.
  • Named after the German Ophalmalogist Karl Stargardt who first diagnosed it in the early 1900s.
  • There are three types of Stargardt's disease:
STGD 1: Autosomal Recessive form (majority of cases); caused by a mutation in the ABCA4 gene.
STGD 3: Autosomal Dominant form; caused by a mutation of the ELOVL4 gene shares similarities to Best's Disease.
STGD 4: Autosomal Dominant form;    caused by a mutation on Chromosome 4.
  • Generally occurs in an estimated 1 out of 10,000 children.
  • Most cases are diagnosed in childhood/adolescence (6 - 20 years old).
  • The mutated genes cause a Vitamin A fatty acid waste (lipofuscin) to be deposited on the macula of the eye. Over time the accumulation of this waste causes damage to the macula which leads to loss of central vision.
Symptoms & Progression
  • Blurry or distorted vision
  • Blind Spots (central scotoma)
  • Difficulty reading or seeing detail
  • Light adaptation issues
  • Difficulty seeing in low lighting 
  • Difficulty recognizing familiar faces. 
  • Color vision also may be lost (late stage)
  • Loss of central vision, peripheral vision stays
  • When a visual acuity of 20/40 is reached vision rapidly deteriorates to 20/200
  • By age 50 most patients' visual acuity is 20/200 (legally blind) or worse.
  • Can not be corrected with glasses or lenses.
Diagnostic Tests
  • Visual Acuity Test
  • Visual Field Test
  • Fluorescein Angiography
  • Color vision testing
  • Visual Electrodiagnostic Testing
  • Electrooculography
  • Electroretinography
  • Genetic Testing
Treatment & Other 
  • At present time there is no cure.
  • Patients greatly helped with low vision aids
  • Encouraged to where sunglasses or glasses with tinted lenses with UV protection
  • Avoid excessive amounts of Vitamin A
If there are any things I should add or things that need to be corrected don't be afraid to leave a comment.

Monday, July 23, 2012

Initial Reaction Caught on Twitter

"I've always wanted to learn a new language... didn't know it was going to be braille #brightside" - Tweet written 04/02/12 in reaction to my diagnosis of Stargardt's Disease.

My twitter account is often used as a cathartic stream of seemingly random musings. Twitter is my preferred social network oddly enough because 95% of the people I follow or who I follow I don't know. So I tend to give myself permission to be unrestricted in what I say on the site. I've tweeted everything from breakups, my spiritual beliefs, my unpopular opinion on tattoos and more. So why wouldn't I tweet about my life changing diagnosis.
The following are tweets from April 2, 2012. They were mostly written after I did some brief research on Stargardt's disease. It was my attempt not to fall into a pessimistic attitude which is if you knew me isn't a difficult task for me.

04/02/12 11:56 am EST  - I guess another person today is going to be shining more lights in my eyes. Hopefully he can tell me what's wrong. 

04/02/12 12:03 pm EST -  I have a feeling I'm going to end up seeing more doctors b4 they know what is wrong 100%. 

04/02/12 5:39 pm ESTI guess it was good I bought a camera today.... there won't be many years left for me to really appreciate pictures.

04/02/12 5:41 pm EST -So I've been slowly losing my vision the majority of my life and didn't know it. You learn something new everyday.

04/02/12 5:42 pm EST - 

I have to "look" at the brightside of things. Looking anywhere else is kinda hard LOL.

04/02/12 5:44 pm EST - I've always wanted to learn a new language... didn't know it was going to be braille.

04/02/12 5:48 pm EST - The official diagnosis right now is Stargardt's Disease. Basically its my parents fault... lol

04/02/12 5:51 pm EST - The glasses in my Avi are not prescription..I'm just trying to look like a hipster.

04/02/12 5:52 pm EST - Don't get me wrong being told at 27 years old that you're going blind upsets me, but things could be worse.

04/02/12 5:54 pm EST - I'm fortunate that I live in a time and place where I have access to technology so I can make the best out of life.

04/02/12 7:24 pm EST - I don't think me being diagnosed with this disease is karma in any way, It predates any wrongs 

I've done, I'm just aware of it now.

You can follow me on twitter under the handle @essceejulies But be warned my tweets can be very unfiltered and candid.

Wednesday, July 11, 2012

My New Perspective

Picture originally taken 06/2012 at the train station in my town - Modified in Picasa editor
 So if you read my previous post (Hello) you might be curious about what my mysterious life changing diagnosis is. Well that's what I'm going to explain here.

It started a few months ago on April 2, 2012. That was the date of my appointment with the eye doctor. I was able to schedule the appointment after the long and arduous process of getting new health insurance. I had been noticing some very slight vision changes over the past couple of years. This vision issue becoming more evident at a temp job assignment where my boss was asking if I needed glasses. I did get reading glasses but they really didn't help me much.

Monday, July 9, 2012


So this is my first "perspective" I guess. I'm so excited to be starting this blog. You'll see more features coming soon but I just wanted to get this thing started. I've had this Blogger account since January but really didn't know what it was going to be about. With recent changes in my life (next post) this blog now has a purpose. 
Yesterday was my half birthday. Yes I acknowledge it, don't really celebrate it but I felt this was a great time to start this blog. 

I titled this blog The Ever Changing perspective of Essceejulies because I thought it reflected my various interests and the mere fact that we are all dynamic beings. Looking back I didn't know how prophetic of a title that would be in my life. 

Just for clarification on the meaning of Essceejulies which I normally write this way eSsCeeJulies is just my internet moniker. Its my first 2 initials spelled out and Julies is a variant of my last name. If you call me Julies or Julie that's ok, but it isn't my name. I'll reveal my full name at a later point in time.

The main focus is to share this new journey of my life that was started by being diagnosed with a life changing disease. This disease has and will definitely change my perspective on things.