Tag: Retinitis Pigmentosa

Posted on by — 2 Comments

Blind Beauty 75 | Nivi Morales

Blind Beauty 75 | Nivi Morales Featured Image Description is in the body of the post.

“I believe people who are visually impaired have an enormous amount of creativity, we have skillful ways of navigating through the obstacles daily life brings. I hope my story encourages people to find their own ways of expressing themselves. Whichever way they find best fits: art, sports, travel, you name it..! Just go for it!”

~Nivi Morales

Blind Beauty 75 | Nivi Morales’ Story

Photo Credit: Maria Luz Salas

For as long as I can remember I have been fascinated by small details. Over the years I have used my camera to express this fascination. This is something relatively straight forward for me to explore because my eyes naturally frame things in their own particular way.

In 2002 I was told I had lost a significant percentage of my peripheral vision due to an eye condition called Retinitis Pigmentosa. Doctors told me I would gradually lose most of my peripheral vision, that there was no cure. For someone who had been relatively healthy, this diagnosis came as a shock. However, I decided not to give up. A year after the diagnosis I started traveling. It did not take long until I discovered a new hobby: photography.

Finding New Meaning

In the last four years, this hobby has really taken a new meaning as my sight continued to change. I started using a white cane and some adaptations to read small print. The new challenges did nothing but fuel my thirst to explore and express myself, to lead a productive happy life. I have continued to capture details of nature, landscape, and buildings in my local area and on my travels.

Every day I make a conscious choice to focus on the positive details. There is nothing more rewarding than capturing a moment and then looking at it through the help of my computer. The sense of joy and fulfillment I get from developing and sharing images gives me the energy to carry on, even in challenging times.

I believe people who are visually impaired have an enormous amount of creativity, we have skillful ways of navigating through the obstacles daily life brings. I hope my story encourages people to find their own ways of expressing themselves. Whichever way they find best fits: art, sports, travel, you name it..! Just go for it!

I want to finish by thanking Stephanae for the opportunity to share my story with you all stunning Bold Blind Beauties out there.

Connecting With Nivi:

Blind Beauty 75 | Nivi Morales’ Story Featured Image Description:

Featured image is a faux fashion magazine cover titled Blind Beauty. Nivi Morales’ image on the cover is black & white. Blocks of text superimposed on Nivi’s photo are: “Bold–She Keeps Pressing Onward, Blind–She Has Deeper Insight, Beautiful–She Sees To The Heart Of Others.” “Real Beauty Transcends Barriers.” “Makeup Trends for 2019–How To Maintain A Flawless Look.”

Additional Images:

  1. This color close-up photo of Nivi’s featured image on the faux fashion cover was taken by her mother. It’s an outdoor shot and in the background, greenery can be seen. Her salt & pepper hair is in a stylish short cut and she is wearing fashionable squarish wired rimmed eyeglasses with pink lip color. She is also in a navy v-neck top.
  2. This image is from Nivi’s recent trip to Italy. It’s a photo of a swan swimming in Lake Garda.
Posted on by — 4 Comments

Blind CrossFit Athlete Is Empowered & Unstoppable

Blind CrossFit Athlete Featured Image Description is in the body of the post.

Today’s Woman On The Move, Kimberley (Kym) Dekeyrel, was recently featured as a cover model on the March edition of CAPTIVATING! An edited version of the following article also appeared in the magazine however we have some exciting news to share! It’s amazing what this woman has achieved in two years after a major lifestyle change.

Blind CrossFit Athlete Is Empowered & Unstoppable

I want to show visually impaired people they can do anything. At the same time I’m showing my children there are no excuses not to be your best. At 37 I am the blindest I’ve ever been, yet I feel more unstoppable now than ever.

~Kym Dekeyrel, Woman On The Move
#1 - Kym, her husband and two sons photo description is in the body of the post.
#1 – Kym, her husband & 2 sons

My story of vision loss began before I can even remember. My parents received my diagnosis of retinitis pigmentosa (RP) when I was five years old. I can only imagine their devastation when they were told their bright blue-eyed daughter would most likely be totally blind by the age of 18.

Without hesitation, they began to prepare me for life and I started learning braille and taking mobility lessons weekly. I learned cane travel and carried around ridiculously large print books all throughout school. Yes, I was made fun of. No, it wasn’t easy being the kid with the weird orange glasses that couldn’t go out for P.E. But my parents placed me in dance lessons and it became everything to me. I was a natural performer and never felt like the blind kid when I was in the spotlight.

Even though I was the poster child for RP, I was an anomaly to doctors. My vision loss didn’t progress like typical retinitis pigmentosa. I lost my central vision first and was left with scattered islands of peripheral vision. Because of this, I honestly never felt like I was understood by other visually impaired people. I wasn’t in denial of being blind, but when you mourn the loss of your vision your entire life it simply becomes a part of your day-to-day challenges.

Life’s Detour After Devastating Diagnosis

#2 - Kym and her husband photo is described in the post.
#2 – Kym and her husband

So my life carried on. I went to college and earned my degree in dance and kinesiology. After graduation, I went to massage school then later met my husband at my first job at a doctor’s office. It was about this time that life punched me in the gut with a diagnosis of lupus symptomatic of rheumatoid arthritis. The agony I suffered for three years made being blind seem like a walk in the park.

By this time, I had one son named Cooper and knew I couldn’t live a life worth living if I could barely move. After doing research my husband put me on an extremely strict diet that saved my life. Within six months of changing my diet, I was back on a treadmill and ready to have our second son, Easton.

I never returned to dancing but two years ago my husband brought me into a CrossFit gym, I was terrified. How could I do anything if I could not see anything? But by the end of my first class, I knew I had found my new passion.

Now, I am trying to become an empowered representation of the visually impaired in the adaptive CrossFit world. I want to show visually impaired people they can do anything. At the same time I’m showing my children there are no excuses not to be your best. At 37 I am the blindest I’ve ever been, yet I feel more unstoppable now than ever in my life. Being blind is hard, but if you live by faith and not by sight anything is possible.

CrossFit Games

CrossFit photo of Kym is described in the body of the post.
Kym doing her thing

@KymPossibleXoXo as she’s known on Instagram, found out last week that she qualified for the adaptive CrossFit games in July. Her Instagram exploded when @CrossFitGames shared one of her competition videos and get this, it’s been seen over 350K times!

I can’t tell you how excited I was to receive a message from Kym with her news. She even said that while we “technically” haven’t met, she was so excited to share this with me. And of course, I was probably just as excited to hear it directly from her.

The adaptive CrossFit games are held north of Toronto and Canada during the country‘s largest Functional Fitness/CrossFit Festival of the year. Over 1,000 athletes of all levels will participate but Kym is the first blind athlete to be invited as a part of the adaptive athlete division.

As having a visually impaired athlete in the competition for the first time, Kym is nervous and excited to educate the adaptive CrossFit community on how to best adapt movements for blind athletes. We are excited to stand by her all the way! We encourage anybody who would like to support or sponsor Kym through her journey to contact her. You can reach Kym directly via email at kymdekeyrel@gmail.com.

Like her Instagram alias, Kym is showing us that anything is possible.

Blind CrossFit Athlete Featured Image Description:

In the featured photo, Kym is doing what she loves, working out in the gym. She is squatting while holding 90-pound barbells straight over her head. Her workout ensemble is a black tank top with gray and black leggings with geometric shapes and pink sneakers. Kym’s long blonde hair is in a ponytail.

Additional Image Descriptions:

  1. Kym, her husband and two sons, Cooper and Easton, are posing together as a family. Mom, wearing a black dress, and dad, in a blue polo shirt, is standing behind the boys.
  2. Kym and her hubby are standing together looking sharp. Date night perhaps? Kym is wearing a sleeveless plum colored dress with taupe dress shoes and her husband is in a suit. He is holding his jacket over his right arm.
  3. In this photo, Kym is in mid-shot of tossing a big ball against the wall at the gym. She’s in the same outfit as in the featured image.
Posted on by — Leave a comment

RP Diagnosis Develops the WHY & Leads to Entrepreneurship

RP Diagnosis Develops the "Why" featured image description is in the body of the post.

RP Diagnosis Develops the “Why” & Leads to Entrepreneurship

“I felt so ashamed and stupid that I was visually impaired. That somehow people would think it was an inconvenience or a hassle that I couldn’t see in the dark.” 

~Hannah Steininger

RP (Retinitis Pigmentosa) was the diagnosis. I got into the car at the eye clinic and sat in silence with the devastating news I’d just received. It was a cold, blustery October day in 2008. I even remember how cloudy it was as the trees stood bare. We were parked directly in front of the window of the clinic. My eyes were fixed ahead on people sitting in the waiting room.

“Am I going to go blind?” I asked my mom after what felt like hours.

I felt my face get hot, as the tears welled up in my eyes. Dumbfounded, confused, and scared, I didn’t know what to think. You can never go back once you find out something like that. Immediately I felt so different. Everything started to make sense:

  • how cautious I was at night,
  • why I had always wanted to sleep with the hall light on,
  • why I hated movie theaters.

The list goes on and on. I was glad that it was all making sense, but at the same time, I wished I hadn’t found out.

Up until age 15, I thought everyone saw the way I did. Why think anything else? I felt so ashamed and stupid that I was visually impaired. That somehow people would think it was an inconvenience or a hassle that I couldn’t see in the dark. 

For about 8 years I decided nothing was wrong with me. I ignored the diagnosis of RP and I refused to take my pills regularly or tell anyone about my vision.

College Changed Things

Once I got to college, I would get into risky situations. Scenarios, like going out and drinking with my friends or walking home in dark, were commonplace. I fell and injured myself too many times to count. Crying
because I couldn’t see on the dance floor like everyone else, I’d leave, alone and in the dark. Why couldn’t I be like everyone else dancing so lighthearted. Going out became so taxing and so painful that I isolated myself my senior year of college.

After I graduated college and moved back to Minneapolis something in me shifted. I was sick and tired of feeling sorry and bad for myself. So much hope I had placed in research and retina specialists. When they told me there was nothing I could do and that my vision was getting worse, I was crushed. I began looking up alternative ways to help heal vision loss. That’s when I found micro-acupuncture.

For the past two years, I have been taking a more holistic approach in the way I manage my RP. I began eating a diet of anti-inflammatory foods, educating myself about how the systems in the body work together, and started going to micro-acupuncture.

As I have been opening up to others about my vision and started to advocate for the modifications I need, I noticed a lack of awareness about vision loss and people who struggle with it. So many people are affected by loss of vision at some point in their lives, why is it not more well-known and talked about in society?

The “Why” Turns Into Entrepreneurship

One year ago, I quit my corporate job and decided to pursue my passion. On February 16th, 2019, I launched Watson & Wilma, a line of ethically made intimates. I designed each piece and enlisted the help of local pattern makers to bring it to life. Each item is made-to-order and sewn in Minneapolis from 70% sustainable and organic fabrics.

  • Bamboo Bra
  • Models

Vision loss is an invisible disability but a major part of everyday, as intimates are a similarly hidden but important part of every outfit. A portion of each sale will be donated to the Penny George Foundation, to help provide holistic care and treatments to those with vision loss. My mission is to spread awareness about vision loss and for the visually impaired community. 

As expected, there are still hard days and days that I become discouraged about my vision, but my “why” keeps me going. I am doing my best to turn my pain into empowerment and allowing it to navigate my path instead of fear.

RP Diagnosis Develops the “Why” Featured Image Description:

A scenic outdoor shot of Hannah smiling while standing outside with a mountain range in the background. She is dressed casually in jeans, striped top, with hiking boots and a long warm-looking sweater. Hannah also has a black knitted hat on her head and her long brunette hair is draped over her outfit.

Additional Images:

  • Bamboo Bra: A black bra called Pick Me Up Around 8
  • Models: Two women (one brunette, one blonde) are wearing all of the pieces in Hannah’s current collection. The photo shows them hanging out in a living room. One of the models is sitting on a sofa while the other one is kneeling on the floor looking through music albums.

Connecting With Hannah:

Posted on by — 1 Comment

New VIP Community Resource

New VIP Community Resource Featured Image Description is in the body of the post.

New VIP Community Resource

I’m pleased to announce my good friend, Victoria Claire has launched a new VIP Community Resource. VIP or ‘Visually Impaired Person’ is an acronym that’s been fondly embraced by fellow VIPs. The resource,
www.victoriaclaire-beyondvision.com, is a website and community where VIPs can find inspiration, support, and advocacy-related information.

Victoria, who is losing her sight to Retinitis Pigmentosa (RP) has an extraordinary story about how she found personal freedom in acceptance. Today, as an Ambassador for Retina UK, she’s a beacon of hope to others as she shares her acceptance journey. A journey, shared through her artwork, writing, and speaking engagements.

Losing eyesight can be a lonely and scary experience but it doesn’t have to be. If you or someone you know is going through sight loss I’d like to direct you to  www.victoriaclaire-beyondvision.com.

Victoria’s Social Media Platforms:

New VIP Community Resource Featured Image Description:

The image is a screen capture of Victoria’s website landing page. It includes her photo and the site’s logo. In Victoria’s photo, she is sitting and leaning forward, with her eyes downcast. Her straight blond hair parted in the middle frames her face. She is stunning in minimal makeup and is wearing a sleeveless black dress with a keyhole neckline. The logo is on a black background with white and purple text and wings on both sides of the text. The copy reads “Victoria Claire beyond vision | Inspiring Supporting Advocating for the VI Community.” At the bottom of the image are social media icons.