Meet Baby Lwazi

Technology Made It Possible

My journey in blogging began in March 2024.  After publishing I would share the blogposts on other social media platforms.  Some Sunday morning I received an inbox from Thuli Baloyi.  The message was to enquire more about albinism because baby Lwazi lives with albinism.  This warmed my heart as the intention was to raise more awareness and my blogposts did just that. 

Thuli's Journey 

"My journey in the world of albinism began on the 31st of January 2024. It was the happiest day of my life when my son was born, yet it was the scariest when it was brought to my attention that he was living with albinism.

I was in complete shock! I had too many questions without answers. This varied from the uncertainty of how I was going to deal with his condition, how his father was really feeling about it, how family will receive him and the community in general. Honestly; I was petrified!

This is my first close encounter with albinism so I had no information about it at all so you can imagine my fears.  Lack of knowledge about the whole situation made me very uncomfortable since I was in an enchanted land.

I searched online to find out more about albinism, what it is and what it means. I did not find much information moreover it wasn't information that I could interact with."

Finding Aunty Thandi

"One fateful day while scrolling through social media, I came across Lebo Grass post about this lady with albinism and encouraged people to follow her blog. I jumped at the opportunity and lo and behold! I had found my holy grail.

From following the blog, I have come to understand my son's skin condition better. I know the importance of keeping him hydrated and using sunscreen. Before the blogposts, I didn't even know about after sun lotion or gel.

I understand that my child will encounter vision challenges, so I have already started giving him proper care by visiting an ophthalmologist. I have also learned how to properly dress him to protect him from the sun.  Most importantly, I have learned to accept that my son is not different from my other children."

Note From  Aunty Thandi To Baby Lwazi

Dear baby Lwazi.  It is indeed a great time to be alive because albinism is no longer a subject discussed behind closed doors.  I believe that mom and dad have all the tools and means to care for you, including available information and Aunty Thandi on text/call for support.  I know that you are going to prosper in life.  I wish you well and I love you my boy.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Social Spaces - Part 2

                                                                         

Traveling the World

Travel runs through my veins because I get to experience other cultures, meet new people and explore adventurous activities   I have travelled to a lot of African countries.  I mostly travel alone and get to meet the groups at the destinations.  

I have never struggled on my own in an international airport. One thing I truly appreciate about international airports is that their signage is visible both in print and color however if I cannot  see anything I am never scared or ashamed to ask for assistance at the information desk.  

Game Drives

Visiting the game parks can be all fun and games until we embark on a game drive journey.  The drives become a little challenging because of the animal colors and forestry color changes with different seasons.  Imagine a giraffe is standing next to a tall brown tree or its time for seasonal change and the grass is not so green anymore.  Yes the bigger animals are visible but my preference in this regard is visiting a lodge where animals freely roam around and bless me with their presence by my window. 

Visiting a church for the first time

When this announcement is made "may all the first time visitors please stand because we want to welcome them to our church."  I always skip this part because I have observed that whenever I visit for the first time, I am mostly spotted because of my skin color.  I normally ask the ushers (in smaller churches) to sit in front so that I am closer to the screens as I love singing along during praise and worship. 

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Short Sight And Technology

Paper Based 

Back in the 1990's when I went to primary school all I knew was reading books that had a large font to accommodate my eyes.  We used to stand in front of a black chalk board and the teacher would use a white chalk for visibility. A magnifying glass or sheet would be used to ease the strain that came with a lot of reading.  Another great teaching method was to have smaller classes, this way all learners would get the required attention.  

I then went to another school (secondary school),  two learners would share a tv monitor/screen which the teacher used as a method to deliver lessons.  It felt great to receive a lesson while seated.

Technology Progression 

Short sighted people do not suffer too much anymore thanks to technological advancements.  Our eyes get a relief through the following tools:

1. Documents can be downloaded and shared in PDF for our consumption.  This helps a lot because I can pace myself so that assignments are submitted on time.
2. The use of JAWS program in the workplace which also accommodates blind people.
3. Audio books can also be purchased and listened to.

Positive Impact

The evolution of technology has really impacted my life in these following positive ways:

1. Magazines were paper based and printed in small font which was a major struggle because I love reading and being up to date with current trends. The fact that I can subscribe or read online feels amazing.
2. Google Maps and other driving apps does the talking and directing because street names are not visible.  This assists with driving comfort as my eyes cannot multitask on the road.
3. Great camera pictures:  If the price or the menu is invisible, I take a picture with my phone then zoom in for better visibility.
4. Most fast food outlets have introduced a self service option.  The menu and prices are more visible and easy to browse through.

Acknowledgement 

Dear Sphiwo Xaba, I want to thank you for your views and contribution on this blog post.  I know that you love the way technology keeps on enhancing for our lives to be better.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Skin Care Awareness

Sensitive Skin

We were taught to avoid the sun at all cost in primary school between 11am and 3pm (South African time) because the UV (Ultraviolet) radiation penetrates deep into the skin.  If one spends too much time in the sun without sunscreen and a hat, there will be long term implications on the skin.  When sunburn is experienced, the skin will have small red patches.  If extreme sunburn occurs the skin will turn completely red and form water blisters which will start to pop after a few days.  

When the skin dries up it will start peeling off.  The times I have experienced sunburn, my skin took more than two weeks to recover.  I normally use a soothing after sun lotion if I spent some time in the sun during the day.

Tattoos 

I am a very curious person.  I wanted a tattoo for a very long time.  All the time I was scared that it would affect my skin in a negative way.  My sister's and I decided on some weekend that we are going to get our tattoos. 

Upon enquiry about our albinism skin, the tattoo artist assured me that nothing will go wrong.  He commented that he enjoyed working on my light clean skin.  It took about three weeks to heal without any problems.  I am looking forward to getting another one. 

Skin Changes To Note

With continuous sunburn and no remedy, a few changes will start to occur on the skin as noted below. It is advisable to seek medical attention for an assessment.

1. Skin lesion which are initially red and crusty.
2. Bumps that appears on the skin as white, waxy lump or scaly patches.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to leave a comment, contact me as well as click the follow button on the Sidebar.

Social Spaces - Part 1

Meet Thandi Precious Manaswe

Every time I get to a new place (especially the workplace) people read me as a serious person.  This can stem from protecting myself with unwanted relationships at work because it was believed that people with albinism bring luck in relationships.  

I just remember a male colleague who came to get some guidance on a work matter, he stood in front of me and asked if this is Thandi? I said yes it is me, he went oh by the way I was warned that I should tread carefully. I had a good laugh just to allow him time to calm down and then realized that he eased up for our work conversation to continue.

Until we share one conversation then most of my colleagues get to realize that I am a loud and bubbly character.  

My sister says I am the social aunt in the family because when I am present in any family gathering there's bound to be lots of  laughter, so much fun and a great vibe.

Social Rejection

My friend and I were chased out of a taxi a long time ago.  As we were getting comfortable and I was preparing to count the money, all we heard was "I don't want these things in my car", his voice had a lot of aggression.  He then said to us go to the next taxi.  This is why I fought so hard to have my own car because the rejection was too painful.

Constant Staring 

I used to be a religious gym member. Eventually I got used to people staring at gym because I would be the one person with albinism in the entire gym. The staring from women in the change room was the most unbearable.  As I undressed one day there was this woman who stopped what she was doing to look at my body. As I turned to the other direction there was another one peeping through her towel but watching me.  I stopped visiting the change room since it would be a matter of getting into my car to go freshen up at home.

Are you sisters 

I have a long term sister (Keneilwe Morake), we met at primary school more than 30 years ago.  We love spending time together this includes going shopping and lunch dates.  Our physical features are very different, we just both have albinism.  The general question a lot of people ask us is if we are sisters?  If I have a moment to spare, this is the opportunity I use to educate the people about albinism if I am in a hurry I say yes and move on with my activities.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to contact me as well as click the follow button on the Sidebar

Disability Grants - Social Assistance

Albinism A Disability  

Albinism comes with an inherent short sight which may vary from person to person.   Since the short sight impairment is permanent, people with albinism are classified under people with disabilities.  Therefore children living with albinism qualify for a disability grant (social grant) which will assist in getting them the necessary care they need for their skin and eyes as our personal care stuff is expensive.  

My family provided for my needs when it came to sunscreen and prescription spectacles, we only got to know about the disability grant when I was in high school and I applied for it.

How To Apply For A Social Grant (South African Context):

1. Obtain the Grant Application Form from your nearest SSASA Offices.
2. Be a South African citizen.
3. Submit a medical assessment report to confirm the disability - in our case (albinism) a comprehensive optometrist report will be required. 
4. Both parents should meet the requirements (financial background will be assessed).
5. You shouldn't be receiving another social grant.

Word Of Caution

1. Please do not make any upfront payment upon application.
2. Once the person gets a job, they should go and cancel the grant as receiving a grant and a salary  may lead to a criminal offence.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to leave a comment, contact me as well as click the follow button on the Sidebar.

Navigating The Roads

Hire A Driver Or Get A Rich Husband

I went to a school that accommodated short sighted and blind people.  They always discouraged us from driving because of our eyesight limitations, I remember being told that I must hire a driver or get a rich husband.  I am grateful that I am a courageous person.  I  went against the odds, got my drivers license and eventually bought my first car in April 2012 as a birthday gift to myself.  Yes I had a lot of fear as I wondered if I would cope on the roads.

Believe That All is Possible 

When I realized that I have managed well on the road and it was not scary at all, I started encouraging most of my friends with albinism (those with a qualifying driving eyesight) to take up the challenge and I am happy that most are driving today.

My Personal Challenges On The Road

1. I experience a lot of eye fatigue as my eyes have to deeply concentrate.  My eyes cannot multitask.  This has led to me moving houses as I drove facing the sun on my trips to work.  My eyes did not take it too well as it caused a lot of headaches.
2. I struggle to blink sometimes because my eyes are dry.
3. Driving in the direction facing the sun, this blinds me a lot even when  I wear my polarized sunglasses..
4. The sun reflecting on the tar road for a long period.
5. Construction marks in black, yellow and red are confusing to my eyes and I have observed that construction works on the roads causes a lot of chaos.
6. Constant brake lights especially if I there is a traffic congestion.
7. Shades of grey on the road (darker to lighter) for example; concrete barriers/tar road and guard rails.
8. Unknown destinations as my eyesight cannot see street names.

My Personal Safety Tips 

1. Because lanes disappear when it rains and it normally feels unsafe, I normally delay my trips, park on the side or do not travel at all.
2. I drive during the day when I have full visibility of everything on the road.
3. I normally keep my safe following distance in case I do not see the brake lights on time.

Gratitude Note 

Thank you so much for taking your time to read. I cannot wait to share further exciting experiences with you.  Please kindly share this post with as many people as you can as it will help me reach out to the world.

Please feel free to leave a comment, contact me as well as click the follow button on the Sidebar.