Day 20 WEGO Health Writers Monthly Challenge
As a health advocate and activist for Avascular Necrosis/ Osteonecrosis for 2 years .
I have had several highlights in this crazy, painful, wonderful way of raising awareness while dealing with my own pain.
Besides meeting some amazing people worldwide which is for me the most important.
From Pennsylvania to South Africa from the U.K. To Egypt California to Argentina.
All Good ,Kind, Loving people we are our own United Nations.
When you look at the news all you see is negative but when I log in and go to our group support page all I see is positivity., sure we commiserate about pain, doctors .
And the new challenges we face but we always show love and support for each other. The world should and could show more human sides. As we are all not so different.
Becoming a WEGO Advocate/Activist is definitely in top 3
Not to many people know about AVN/ON and my mission is to change all that.
Our disease is so rare we didn’t have a ribbon for it
So my group members and myself felt that our disease was truly being ignored
Often it’s hard to find qualified surgeons that truly know about the pain and complexity that seems to accompany this disease
My # 2
So I made some designs contacted a graphic artist to help me with them
And a short time later we had our ribbon
I then contacted a jewelry maker on Etsy whose name is Tracy Jordan w/ RockYourCauseJewelry. I swear the Lord put her in my path for this reason.
And TaDa we have keychains, neck-chains, bracelets with my designs. I gave her the ok to use them as they are copyright protected
We have a ribbon for the disease
It starts many conversations which is the point and it gives those who have the disease a bit of comfort knowing we will not go unnoticed or quietly.
So several months later I asked the group questions as well as gather my own info from experience and talking to some Surgeons
And I put together a booklet that just was printed November 18th 2016.
I spent a lot of time and energy on it and I must say it’s beautiful
My goal is to try and get sponsors to help me fund it to keep it going
So my plan is
For 25.00 a Doctor , Company or Individual can place an ad
Their logo will appear on back pages and they will get 5 copies of booklet and we will be able to continue to send them to members of my fb group and agencies and health fairs.
My support group on f b is called
Avascular Necrosis/Osteonecrosis Support Int’l
I have members who volunteer to help me mail the booklets out. We’re a great group and a great Team.
We are World Changers
To get them reprinted
I need 10 sponsors for 200 copies or 17 sponsors for 500 copies
Posted in this page are showing off some of my highlights.
Now being a health activist and advocate as well as a patient myself isn’t always easy and often a pretty thankless job. The members of my group appreciate all I do.
But the general public mmm not so much, I mean can’t we get a Doctor show anyplace to highlight this disease once in awhile?
Sometimes it will feel like you’re doing a lot if not all of the work for very little return spending countless hours of our free time, pouring myself into project after project , and your never compensated for it.
But you know I think I didn’t get into this for thank you ‘s
I got into this because so many people suffer
Would I like to get paid for my efforts, absolutely
But I do it because I get tired of no one knowing about this disease unless you have it.
Thanks just not cool with me.
And I am set on changing that.
Although the disease called osteonecrosis was discovered in Egyptian mummies, there is a lack of information available in understanding and treating this disease.
The word osteonecrosis comes from a combination of two words which mean that part of the bone is no longer alive and cannot regenerate itself due to a lack of blood supply.
In most cases, the disease attacks people in their late thirties and forties for the first time. If left untreated, it will eventually destroy the joint, thereby requiring a joint replacement. It is estimated that 15 percent of all joint replacements performed in the United States are due to osteonecrosis (also called avascular necrosis).
Although osteonecrosis is not life threatening, it is extremely debilitating, especially when you consider the age factor.
The juvenile version of osteonecrosis is known as PerthesDisease and usually afflicts children from ages four through twelve.
So I am honored to take this challenge of raising awareness.