Wednesday, February 29, 2012

      TODAY, FEBRUARY 29th, 2012,
               "RARE DISEASE DAY"

The LINK for the website is:
The LINK for the US website specifically is:

At this website, you will find ALL kinds of information about this day, and ALL the individuals ALL around the WORLD who must live with them. 

What is today about? Here it is, copied and pasted from the first posted website:  

Rare Disease Day is an annual, awareness-raising event co-ordinated 

by EURORDIS at the international level and the National Alliances of 

Patient Organisations at the national level

February 29, 2012 marks the fifth international Rare Disease Day 
coordinated by EURORDIS and organised with rare disease national 
alliances in 25 European countries. (This also includes the United States) 
On this day hundreds of patient organizations from more than 40 countries
 worldwide are organizing awareness-raising activities converging around 
the slogan “Rare but strong together”.
Activities will take place across Europe, all the way to Russia, continuing 
to China and Japan, in the US and Canada, and as far as Australia and
 New Zealand! Get involved!
The focus of this year's event is Solidarity.

       “Rare but Strong Together”!

PLEASE GO TO THE World Wide website as well as the US website! Celebrate RARE DISEASE DAY, FEBRUARY 29, 2012!
IF you are reading this the day or the week after, please still check these websites out so you are aware. The MORE people are aware, the MORE of a chance of the possibility that cures  can be found, or if YOU are suffering from one of these yourself YOU CAN HELP AS WELL JUST BY BRINGING AWARENESS TO PEOPLE!
The MORE we work to find cures, the MORE peoples' lives will become SO much better!
Thank you NORD for participating in this day!

If ANY of you would like to help support this cause, and it is a HUGE cause which helps SO many people, please feel free to do so at ANY time of the year!

Some of you may be wondering WHY am "I" celebrating this day, and WHY am I bringing awareness to this day?
The reason is "I" HAVE A RARE DISEASE CALLED STIFF PERSON SYNDROME. It only affects 1 in 1 MILLION people! That is ALL. I'm a RARE bird! This disease started to take my life, as I knew it, away in August of 2004. That one day in August this hit so hard, it threw me into bed and I could no longer work. The disease literally hit so hard and almost out of nowhere, it did throw me into bed riddled with spasms, unable to get out. 
What this disease does is it makes your muscles go stiff/rigid, then they spasm out of control because they are not supposed to be completely stiff. It starts in the core group of your muscles, taking your breath away, literally, and they work their way down all the way into your toes. This generally lasts several hours, to the rest of the day or night and sometimes into the next day. Rest. You need to rest as they can come right back at any moment. Just the right trigger is needed, including moving the wrong way. There is a lot more to this disease than just what I have written about so far, but suffice it to say these spasms can put up to 6 TONS of pressure on your skeletal system. My back is a train wreck. The spasms are even know to break ribs, they are so strong. 
Even though I have this HORRID disease that rules your every moment of your life, and it will never go away, I remain VERY positive and am a VERY happy person. It's my nature! I am still very optimistic and always look to the good in things and people. I've had to change the way I do a LOT of things, and some I just cannot do, but that is okay.
The person who helped me the MOST is Joni Erickson Tada. I don't know if you are familiar with her or not, but she had a diving accident when she was 17 and became a quadrapalegic. Today she has been married well over 30 happy years and has a HUGE organization. She does a lot of charitable work, especially one that helps people in third world countries obtain wheelchairs.
Joni paints! She uses mouthsticks! She has very strong faith, and states that is what pulled her through. There is a Bible verse she refers to that I have written down that has helped me tremendously! It is 2 Corinthians 12: 7-10 which says:
To keep me from becoming conceited because these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (NIV)  
I hung that verse up everywhere! On the bathroom mirror. On the refrigerator, on my bookcase, on my desk, everywhere!
I figured if Joni is a quadrapalegic could get by and live such a full life, so can I! That IS what saved me!  Thank you, Joni! That verse has gotten me through many years now!
So I take it day by day. I have to. No choice.
I have NOT written this to get Comments back patting me on the back for going through this so positively, but I have written this so that perhaps "I" can help someone else out who really needs it, just like Joni did! I just find being happy, positive and optimistic really helps anyone get through anything. It's not an easy thing to do at first, as there were many days I went through anger that this happened, which is why I say Joni helped me so much.
Anyone with a rare disease needs to find a role model they can look up to, in my  opinion, to help them get through.

Thank you for taking the time to read this and to be supportive, even in prayer, to ALL the people in this world suffering from Rare Diseases. THANK YOU!

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