Friday, September 27, 2019

Startling Reality on Awareness: Part 2 ~ Future Suffers For Our Deficiency

Our lack of awareness could cost the future.

That sounds a little dramatic, right..

I genuinely feel that is the truth, though.

If you missed part 1 of this series, 
you can find it here - Startling Reality on Awareness: Part 1 ~ The What !

https://www.disabled-world.com/disability/awareness/ribbons.php
Click the picture to find your color!
May not be a Complete or Accurate list of Ribbon Color Meanings
 
Every day that we are not making people (namely our children) aware of the differences in society (and how to react, treat and think about those differences) is another day that our world lives in the dark.
The dark that offers no comfort, support or love for those who need it, probably needing those things more than most..
If we do not guide our peers and children in good morals, respect, empathy, compassion and manners, there is no hope that our future world will be a place fit for the special people in our lives. Those that suffer from difficulties that I can not even imagine. Visible and invisible.
(I can imagine a lot, these days. I feel like there is very little that I can't imagine, medically- of course I am wrong, I know, but having my special needs little guy has put a lot of things into perspective for me and pretty much everybody who knows him. -I have told his story in previous posts but later in this series I will explain further, exactly what my statement means.)


 I guess my concern comes down to the fact that cancer gets a lot of attention. There are more than 100 different kinds, so it makes sense that it would affect a lot of people and garner a LOT of awareness!

Don't get me wrong, please.
 I am not saying there shouldn't be awareness for cancer. I can't imagine how difficult it is. It is amazing to see people come together from all over, celebrating each other when it's a battle won and offering support for those families who weren't so lucky.

This actually hits me pretty hard right now.
 I have been working on this post for a little while and was able to keep a "professional" viewpoint, until I got here.. That I would be writing on this topic, when my aunt has just reached the end of her hard battle, with this very thing, is unexpected and heart wrenching.
 I can only hope and pray that her transition was painless and that her husband and adult children can take a few loving memories from the end of her journey, with them and remember those instead of her last hardships..


 Back to my point..

I feel driven to get this out into the world!
There are so many things that people have to deal with and yet only a few "big ones" get any kind of attention.
Forget about rare conditions. They only see a tiny amount of publicity and funding because they're rare and such a small number of people even know that it's an actual "thing", (for instance, our Axel being born without an anus. Yes, we spoke those exact words- That's a Thing?!).

There are foundations for many of them, but not all.
Nonprofit foundations are amazing! These people have a true love for helping others and they do whatever they can to create and/or gather as much information as they can, to help anyone that needs it! The unfortunate part is that most of the funds come from donations. While Google says that in 2017, charitable giving reached more than $410 billion, how many charities are we talking, there? 
It lists that there are more than 1.5 million nonprofit charities in the world. Those numbers don't look too bad.. But.. something tells me that there are a lot of other charities that are "for-profit" that people might not quite realize. However, Google isn't quite as easy to pin down on that question.

Let's dig into this a little bit. I think I can help you better understand my view on this delicate topic..

Frankly the number of new cases of cancer (cancer incidence) is 439.2 per 100,000 men and women per year (based on 2011–2015 cases)
When you consider this United Nations estimates the number of men to approximately 3,776,294,273 while women are estimated to be approximately 3,710,295,643, in the world. Approximately, 107 boys are born for every 100 girls born.
Wow, those are some huge numbers!
I'll just use the men's figure,  for ease. Just remember to times it by 2 to get nearer to the actual number..
8,598,119.92!
Oops, times that by 2, right.
17,196,239.85 people, per year, get cancer. That is mind numbing.

Now, lets take a quick look at something rare. There were many to choose from, but I decided I would use Dandy-Walker malformation
To say that I have a big personal interest in it, is putting it lightly. I've written much about Axel and the effects of Dandy-Walker previously at these links; Axel Post # 1Axel Post # 2
Axel Post # 3Axel Post # 4Axel Post # 5
Axel Post # 6All (10) of 2019's Posts


The frequency of Dandy Walker Malformation in the US is approximately
1 per 25,000 -35,000 live births and affects more females than males.
If you go back to that big scary number above, of how many people live there are in the world..

107,894.12
Times 2....
215,788.24 people are born with Dandy Walker, per year.
That's quite a huge difference!
17.19 million vs 215,000 per year.. That part gets me.. "Per Year"..
It is mind boggling to think that these numbers occur annually.

What about something ultra rare..
With only three diagnosed patients in 27 years, Bibose-5-Phosphate Isomerase Deficiency (RPI) is considered the rarest known genetic disease in the world. There is no treatment or prognosis (meaning the likely course and outcome of the disease is unknown.)

With such a low number, I'm sure we could all come up with an approximate number of people aware that such a thing could exist. 
Admittedly, I didn't know of it until today. Did you?

If I went even further, I could times that by possible family and friend guesstimates and almost get a general idea of how many people are AWARE of each of those conditions.. But- I won't even try to go there. I think these numbers make a few things very obvious.
OF COURSE more people are aware of cancer(s), it affects an alarming number of us.


This takes us back to my original point, "guiding our peers and children in good morals, respect, empathy, compassion and manners";
 
If something as big as cancer or as ultra rare as RPI can be in our world, think of the alarming number of others. {My 1st awareness Post- Part 1 The What- gives some information on that number.} 

More importantly, think of the people that are coping with these conditions, rare or not, visible or invisible, mild or severe. Symptoms unknown to passersby.
People that we see every day, people that we know and strangers that we pass, while going about life.
Some of these people would prefer to stay hidden, not letting the world know of their struggles and suffering, just to get through the day.
Other people go out and try to help- push and shove some interest into things (whether it's their own health or awareness for conditions) that many people just do not want to hear.

For instance. This Awareness Series..
I have a good purpose for putting a lot of effort and time into this.
But, I honestly question how many people will go looking for that startling information above.

I think most of us would be happy to bury our head in the sand, than to be so enlightened. 

Unless of course, a condition takes a hold of you or a loved one.
In those cases..
I think a good portion of us want to "Get our Awareness On!" and spread the word <3

If you'd like to Get Your Awareness On, Too, check out my Etsy!


Reference Links Not Listed Above;


By the way, it's Childhood Cancer and Hydrocephalus Awareness month
Many prayers sent for all of the warriors dealing with these difficult conditions <3

Dandy-walker --- https://rarediseases.org/rare-diseases/dandy-walker-malformation/ 

Rare / Orphan Desease info https://en.m.wikipedia.org/wiki/Rare_disease

https://en.m.wikipedia.org/wiki/Ribose-5-phosphate_isomerase_deficiency


Monday, September 16, 2019

Something Special for my Sister

Today, I thought I would do something a little special for my sister. It's not her birthday or a holiday.. I just want her to know that I love her and how proud I am of her!

Send love to your sisters, today!
I had no idea that there is a sister's day! 

Obviously I missed it since Google.com shows that Sister Day is August 4th!
Figures...
But she didn't know either, so it works out ok. ha-ha

https://www.facebook.com/pg/BlingonwithChristisCuties/about/?ref=page_internal
 My sister, Christi, (or sissy as we like to call each other) is in my top 3 heroes..
It might not sound like it, but that's saying something...and she doesn't take offense. ;)
She is 3 years older than me, so I've pretty much always looked up to her.
She is the mother of my very 1st hero, my niece Becca.
My 2nd hero was easily found in our Axel. I was just a few weeks pregnant when we discovered what a warrior Axel already was.
We will tell their story as well as others, within my Awareness Series, at a later date. I'm looking forward to it and you won't want to miss it ;)

 Christi has taught me how to be a better mother and person.

At a time when I was too young to understand the model and influence that she was for me.

For the last 24 years, I have watched her work her fingers to the bone as she raised her children, had zero time for her self, began and rocked her own cleaning business and become an integral part of the management of apartments.


A little while ago, she fell in love with Paparazzi Jewelry accessories and became an independent consultant! 
She has the best Facebook show, every Wednesday at 8! 
Christi's Cuties Facebook page.
Her VIP group is Here!

 Being so focused on accessorizing, it makes a lot of sense that she has found the best makeup to show off her beautiful bling! Every piece of jewelry is $5 and lead & nickel free!

Christi Sparkles with Younique

On her pages, you will find information about the products, as well as pictures and a whole community of people! Check it out, you will be surprised what fabulous products she has!


 I am super proud of my sister!

She and I have been through a lot, we are best friends and there is nothing that could ever change that.

 She has taught me how to keep going when it would just be so much easier to stand still.


She is my sister and I love her fiercely

 She strives every day to take care of those who matter to her and I am beyond blessed that my family and I are among them.


Call your sisters ;) ;)

Take good care my friends & God Bless <3