Saturday, February 28, 2015
HAPPY RARE DISEASE DAY 2015!!! RAISING AWARENESS ABOUT RARE DISEASES! Come visit to learn more!
WELCOME! Thanks for coming by to visit for RARE DISEASE DAY 2015! You can celebrate this day EVERY day, too, not just today. You can click on the link above to go to the 'official site' as well as read my story, too!
I have the Official Video for Rare Disease Day 2015 and I would LOVE to share it with you! Here it is!
Rare Disease Day is celebrated every year on February 28th, and every leap year it is on February 29th!
You'll see a list of Rare Diseases in this video, but it's SO SHORT! It's only a small, partial list.
For the United States, you can visit this website HERE!
It's kind of sad. The US has 2 sentences of what can be done here, and that link takes you to a page has very FEW things we can do for Rare Disease Day here in the US. We can LIKE a Facebook page, or follow them on Twitter. Really though, what DOES that do in the grand scheme of things? Not much. I wish we did more, and it saddens me that we don't do more, however, it is outside of the box that usual medical care practices, which can be the absolute answer.
Oh! I have Stiff Person Syndrome. You'll notice on the video under "S" it says Stiff Man Syndrome. At least here in the US the official name is Stiff Person Syndrome. The women, (and 50% more women have this disease than men) all got together wanting to change the name to reflect the proper name! It's not 'just' men!
I have now had this rare disease for more than 11 YEARS now - TOO LONG! Yes, it was a bear to find the correct diagnosis, however, once I found the right doctor, he INSTANTLY KNEW what I had just by looking at me! It was AMAZING!!!! There is NO CURE. These rare diseases are EXTREMELY DIFFICULT TO FIND A DIAGNOSIS FOR! DON'T GIVE UP!!!
The average time to find a correct diagnosis here in the US can be 7 years or longer! In my case, it was a total 3 to 3-1/2 years 'after' I was totally and permanently disabled by it, and unable to work, and suffered from it for several years already and being mistreated for so many other WRONG illnesses you would never BELIEVE all the wrong illnesses I was diagnosed with! The MANY DIFFERENT DOCTORS "STILL" could NOT find a correct diagnosis for what I had, and that I felt 'in my gut' was NOT the CORRECT diagnosis.
LISTEN TO YOUR GUT!!! THAT IS WHAT IT IS THERE FOR! See out the right doctors, such as a Neurologist to find out more! You CAN do it to help yourself along!
That is the KEY there! If you feel the diagnosis you have is wrong, keep going online and researching it. That is what I did. I kept getting told I had Osteoarthritis, then it was Sarcoidosis, and on and on and on! What NEVER added up was the severity of the muscle spasms I suffered from. NONE of them matched the definition of ANY OF THE DIAGNOSIS'! NONE OF THEM! Sure enough, I was RIGHT! Listen to your gut. I SWEAR by it! Continue to listen to it, too. You may have other problems caused by the disease which can throw the doctors off, but keep looking. You'll find the CORRECT Rare Disease EVENTUALLY! I PROMISE!
Stiff Person Syndrome causes severe and unrelenting muscle spasms. It doesn't take much to set them off. I fight them ALL day, EVERY day. The muscle spasms are paralyzing. You cannot move, and you don't dare take a deep breath. They are horrid. SPS only affects 1 in every 1 MILLION people. It is extremely rare. It is NOT a fun disease to have, and in fact, it steals ALL your fun away. You can't do much, and sometimes to get around, you end up needing canes, walkers or wheelchairs. I need to use a wheelchair. I can do about 7 steps inside the house, and most of the time I cannot. Every day is different.
Here is an excellent link to a great article where you can read more about rare diseases HERE! It is an excellent website to learn a LOT from.
PLEASE NOTICE - THE DIFFERENCE BETWEEN THE US AND THE UK! Many people with socialized medicine in the UK found their diagnosis' FASTER than people HERE in the US with Individual Insurance policies. I can probably give you a LOT of answers as to WHY that it, too, but you will have to PM me at laurieisreading at gmail dot com to ask why. I don't want to go into all of that here. One thing I WILL state HERE is that it is SO HARD to get Referrals to see different doctors HERE! WOW!!!! Even now after I have been diagnosed, I give up on seeing some doctors because I wait and wait and wait forever to get a Referral form to be able to GO and see them, and sometimes they never come through. Patience is a virtue!
In my opinion, I don't feel the US does enough like other countries do (take a look at HOW MANY other countries participate in today! WOW!!! (You need to go to the website in order to be able to see the other countries. I'm sorry but the graphics they have available there for us to download and use are not blog-friendly.
The US isn't even LISTED on that page of other countries that are participating!) I don't feel the US does enough for the people who suffer from rare diseases AND their CAREGIVERS, either. The Caregivers. They work their behinds off to take care of us! WOW!!! I look at my husband and ALL the running he does ALL week, every week, all for me. I feel guilty! He NEVER gets a break, NEVER gets a rest from doing things for BOTH of us, etc. That is the hard part! HE needs a break, but NEVER gets one.
Let's celebrate the Caregivers, too! Please, if you know of a Caregiver, go on over and give them a break so they can leave the house and do something THEY love to do! Take it from me! I know! The only problem is we don't have anyone to help my husband out. It's HARD.
As we celebrate, let's HOPE for MORE cures, too! Stem cell transplants 'seem' to be working on some people with SPS. We'll see!
Congratulations to everyone with a rare disease!!! IT'S RARE DISEASE DAY!
After I finished writing this Post earlier, I have since come across THIS WEBSITE that has a lot of stories from people who have Stiff Person Syndrome, how we live with it, what it does to us on a daily basis, and/or how this disease insidiously moves into their/our lives and completely takes over our bodies, how how it affects us in the beginning as it takes over our bodies/our lives, and how we 'have' to live with it day to day for the rest of our lives. We can't make rhyme or reason how this disease moved in or WHY??? Why did this get us, and we can't figure out how it does this to us every single day of our lives and have NO control over it. That, is mind boggling. We will just be sitting here typing like I am right now, or reading, and the next thing we realize is SPS has taken over our entire bodies riddled with muscle spasms so severely, we are writhing in pain while consciously trying to figure out 'what have we done to cause this'? so we can TRY to avoid it from happening again. The answer is NOTHING! We've done nothing physical that makes sense for the severity of these muscle spasms to move in and take complete control of our bodies like this, so why is this is happening??? Reading about how it took over someone else's life is so familiar that it gave me the chills as I read some of the stories and could so relate to ALL of the people!
The first story - In tHeHe He washe beginning I have never fallen in the street, but then again there really aren't any streets where I would have needed to be crossing. I've also been smart enough to catch I was having problems immediately and since this disease hit me HARD AND FAST, I didn't have much time where I went through this. My husband recalls one time we went out to eat, and the waitress was going to sit us all the way in the back, and he felt my entire body stiffen. He said he could have taken a finger and pushed me over just like a statue. He was amazed at that. What had gone through my head at the time was I didn't think I would be able to walk that far without going down and into spasms AND in front of ALL THOSE PEOPLE!!! My DEAR husband (and I TRULY mean this!) told the waitress I had a walking problem and wouldn't be able to make it that far. She sat us right there! Thank God!
I could relate to EVERYTHING ELSE THIS WOMAN HAD GONE THROUGH! I LOVE this website!
There are support groups on Facebook, so we are not alone in fighting this!
When this disease hit me at it's hardest, it literally threw me INTO BED a second time, except this time was a little different. I couldn't get out. That was way back on August 16th, 2004. I'll NEVER forget that day and the months and first few years after that.
The ONLY thing that got me out of bed was a medication that is an antispasmodic/antispastic medication often given to people who suffer from Multiple Sclerosis called Baclofen. It did some miracles, and even to today keeps me out of bed. Bed - although I can no longer sleep 'in' a bed because I can't sit up enough or roll to get 'out' of the bed because my medication has worn off. I can only sleep in a recliner - in the living room, which really stinks!
The first article talked about agoraphobia. I don't have that, but I really don't get out of the house. I can't barely tolerate riding in a vehicle. Just the motion of the vehicle alone, the braking, turning, etc., causes a lot of stress on the core muscles of the body, so I really prefer NOT to go out anywhere.
Back to the bed - there are many beds that recline, but they also come with a huge price tag, too, so we are stuck like this, separate. I'm in the living room and he is in the bedroom. Maybe one day??? After Christmas I did find a set for about $2,500, but my husband wasn't happy with that price or the salesman on the phone. He was pretty pushy. He wanted a sale and ONLY a sale. (WHY salesmen who are older like that man is don't know by now that the "pressure technique" does NOT work, I'll NEVER understand! We were buying this thing sight unseen, unfelt, etc. HOW were we supposed to know how nice or NOT this bed was??? Come on! Everything had a restocking fee, too, even if we didn't like it, and given the fact we couldn't even try it out, WE definitely had our hesitations. The brand name of the bed was Craftmatic. Anyone have any experience with a Craftmatic bed before?
That's all for now! I hope I taught you a lot about Rare Disease Day 2015! If you ever want to learn more, give me a shout, and I'll try to help you out! Thank you for taking the time to read this!
Posted by Laurie Carlson at 8:55 PM