About Us

I grew up a fully sighted person with no signs of vision issues until I turned 27. I began to experience some struggles with my sight but figured it was only due to tiredness. At the time, I had a 7-month-old and 4 more children with my husband. Being a stay-at-home mom was busy enough, and keeping track of my kids made me feel as though I didn’t have time to worry about my sight. After my family insisted that I get my eyes checked, I finally decided to go for an eye exam. At first the Doctor was quite dismissive, I had an astigmatism, no big deal however I knew in my heart this wasn’t the answer.  I had no intentions of paying for a prescription that did not improve my eye sight at all.  I insisted he needed to keep looking, so after a lot of resistance on his end, he did an eye health test, put the drops in, then he saw the significant damage in the back of both eyes. He had no idea what this was, or what vision I would be left with, if any.  I would spend the next 15 years visiting every Retinal Specialist in British Columbia and was even sent to Calgary, Alberta for testing. I know these doctors were trying their best to give me a diagnosis, but the process was demoralizing. Every doctor wanted me to see another doctor. It didn’t take long for them to realize how bad it was, but no doctor was sure whether or not I would be left completely blind. I felt small, vulnerable, unwanted, and misunderstood and a bit like a circus freak.  There was no way I’d be able to work when I couldn’t even read without the font being drastically enlarged, I couldn’t recognize faces anymore and I definitely couldn’t drive anymore. I could barely keep an eye on my kids when we were out of the house unless they were dressed in bright colours. I’m sure you can imagine how much my teenagers loved being in bright colours with mom. My husband quickly learned that his new role as a partner and a father was about to become quite a bit heavier. When we married, we pictured ourselves in equal partnership; I would stay home while the kids were still small, and he would go to work. We never thought he would also be taking care of a wife who was losing her vision.

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As I stated earlier, I was misdiagnosed a lot. But the worst diagnosis was when the doctors concluded that my blindness was caused by medication. The kicker was that I didn’t even need this medication. After having my last child I was put on medication for what we assumed was postpartum depression, but later found out it was actually a thyroid condition. This diagnosis was the hardest for me to accept, knowing that everything could have been prevented if I had only asked my doctor more questions.

 

In 2019 we moved to Alberta where I was offered genetic testing for the first time. Looking back I’m not sure why I was never offered it before. The first test came back, I was a carrier for multiple conditions that cause sight loss but nothing that caused my kind of blindness.  This was bittersweet for me, on one hand it means it was not genetic so I do not need to worry about my children, but on the he other hand it meant this could have all been prevented, I was gutted! In March of 2021 I was called into the genetic office again.  I was informed that the lab had retested my sample and declared me as being 1 of 8 people in the world with this rare form of Macular Dystrophy. The lab and doctors felt confident that the damage was done and I do not need to worry about further blindness.  I was also told that even though it is now considered a genetic condition, I still do worry. Not needing to worry about my kids losing their sight like I did, they would be carriers but unlikely they would lose any sight to this disease. 

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So why VIPwear? As you can imagine, living half-blind in a sighted world has not been easy.  People are often confused by when I say things like I’m legally blind, or blind; because my eyes don’t look blind, but that's because all the damage is in the back of the eyes.   There are many things I used to take for granted like doing my make up or hair and putting colours together but I keep working at it.  I do walk with a white cane, I would even say now that I have grown to love my white cane.  I use to cry when my husband handed it to me but I have grown to have a great deal of respect for it.  However, I have learned that there are many times where my cane doesn’t work such as pushing a grocery cart, asking a waitress about the menu and she points to it or pointing to where the bathroom is. There are  times I leave it behind because I am checking my mail or walking somewhere familiar with my my dogs.  V I P and the stickman with cane are 2 familiar phrases in the blind communities language coming together as one!  My first item I created was this logo on a hat because it was a quick, simple item at eye level that happened to speak for me when I was unable to speak for myself.  In no way am I ever saying that items from VIPwear will replace your white cane, it won’t.  It's one more tool to let others around you know that whether you use a white cane or not, you are choosing to let others know that you are a Vision Impaired Person, and this can mean you may need a bit of help, or patience or you need that person to be more descriptive instead of pointing.  It offers a gentle reminder to those around me.

 

 

With love, Amanda