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Johnny Depp Shows Some Love For JM (juvenile dermatomyositis)

Johnny Depp Shows Some Love For JM (juvenile dermatomyositis)

First I gotta say WOO HOOO!! I have DM (dermatomyositis) and I know that there are only 20,000 adult cases of this in the US. It’s a rare disease and in being so, it goes unnoticed where we want it to be noticed-Mainstream. If a Hollywood-ite holds up a bracelet that says Cure JM the whole world will be asking, what is JM? And the awareness train leaves the tracks. Thank you Johnny Depp. Dermatomyositis is an awful disease, but JM for kids is even worse. I SO appreciate you taking the time to hold that up for the 5,000 kids that suffer with this disease in this country.

 

 

Depp Rules!
This photo was graciously lent to me by Cassandra of Cassandra’s Journey with Juvenile Dermatomyositis (JM) and Juvenile Arthritis. Thanks Cassandra. xoxo
Click on the link and go say hi. See if there’s anything you can do to raise awareness of this awful disease.
In this country we have only 20,000 cased of DM (dermatomyositis) in adults. For children that number is much smaller, only 5,000 children in the US have JM (juvenile dermatomyositis).
There is an amazing resource for kid that have DM and their families called Cure Jm Foundation. It was started by parents of children with JM.   Here’s a video from Cure JM Foundation that tells about the autoimmune disease for children.

                                                                                                                                                                                         Thanks again for showing your heart to the world. It might make a big difference to these kids.

 

For all the Fibro disbelievers, Here ya go!

For all the Fibro disbelievers, Here ya go!

You have GOT to see this doctor’s response to all the nay sayers. Hilarious + Facts = I love it. Hope you do too!

 

Until next time,

AARDA and “My Autoimmune Story”

AARDA and “My Autoimmune Story”

The American Autoimmune Related Disease Association, or AARDA, launched a video series called “My Autoimmune Story” to increase awareness and education of autoimmune disease.  Actress Kelly Martin, who is a spokesperson for AARDA, started off the series with a video of her own. She speaks about losing her sister to lupus and how it has affected her. She also speaks about her role as spokesperson and being dedicated to getting the word out about autoimmune disease.  Here’s her clip. 🙂


Press Release:

AARDA LAUNCHES “MY AUTOIMMUNE STORY” VIDEO SERIES

Emmy-nominated Actress Kellie Martin Shares Her Story, Calls on Others to Share Theirs, Too

New Survey Reveals Need for Increased Awareness/Education of Autoimmune Disease
DETROIT, March 28, 2013 – The American Autoimmune Related Diseases Association (AARDA) has launched its new “My Autoimmune Story” video series on its YouTube channel with the first story contributed by AARDA’s longtime spokesperson, Emmy-nominated actress Kellie Martin.

Part of AARDA’s 2013 March is National Autoimmune Awareness Month activities, the goal of the new series is to give the 50 million Americans afflicted with autoimmune disease (AD), as well as their families and friends, a national voice and platform to share their personal story.

“Preparing and sharing our personal autoimmune stories will help build critical mass and focus national attention on a major disease category in this country that is often overlooked,” said Martin, who has served as AARDA’s spokesperson since 1999. “Imagine the impact we would have if just one percent of the 50 million Americans suffering from autoimmune disease uploaded a video… that’s 500,000 stories.”

AARDA hopes by collecting and featuring these short videos, it will help educate people about the widespread impact of ADs, the difficulties in getting a diagnosis, the family or genetic component and the financial and emotional burden of living with these chronic illnesses.

AARDA is asking Americans who have been affected by AD – patients, families and friends — to post a video response to Martin’s video, sharing their autoimmune story in a 1-3 minute video vignette (www.youtube.com/aardatube).

 

Wow, if only 1 percent of the 50 million people made a video….think of the impact of that could bring to raising awareness buy paroxetine!!  That’s an incredible amount of people dealing with autoimmune disease in this country. Does watching this make you want to tell your own story? It does for me. Here is the link to go directly to the video * click here.*  If you’re like me and you’ve never posted a video response to a video before, here is a link to a short tutorial that walks you through the steps pretty easily  * click here.*

 

Sondra DuBose’s autoimmune story. Check it out 🙂

 

I’m totally nervous about doing this but I’m going to do it. Are you ready to tell your story too?

 

 

 

 

 

 

 

 

 

 

 

Videos on Dermatomyositis; The Good, The Bad, and The Ugly

Videos on Dermatomyositis; The Good, The Bad, and The Ugly


I’m cruising You Tube looking for videos to update the awareness videos on the sidebar here. The first video that pops up when searching ‘dermatomyositis’ is the same one that popped up I don’t know how many years ago. I got frustrated when I viewed it now, just like I did when I viewed it a few years ago. If I was a person to rely on one You Tube video I’d be severely misinformed. That’s the ONLY thing that saves me from blowing a blood vessel; knowing that most people will keep searching and reading to find out about something that they’re interested in.

She describes it to feel like ‘a mild flu’, oh brother to that one. Then, the interviewer asks her about the outcome and she paints such a rosy picture! She says ‘it’s usually about 2 years for the complete treatment of dermatomyositis’…whaaaa??? I want to go to wherever she’s at…she also says in most cases after putting it into a ‘quiet state’, which would be remission, it doesn’t usually come back. Again, where is she getting this from? Periods of remission may happen, they may not. There’s no ‘usually’ or ‘mostly’ as to it staying gone…sigh. I’m not trying to ‘fatal-ize’ this disease, I only wish that people in places of authority would state the facts. It’s irresponsible not to.

We need a cure. We need research, and research funding. We need enough people to care about a disease that’s rare. It still affects people, it still disables people, and it still kills people. People with DM are at a higher risk for developing certain cancers; cervix, lungs, pancreas, breasts, ovaries, and gastrointestinal tract. [mayo clinic] Interstitial lung disease is seen in 20 to 80% of patients with DM, depending on many different factors, with ILD being a major cause of morbidity and mortality. [ILD in DM and PM]

Here’s a really good informative video. It’s definitely not ‘user friendly’; it’s a technical video for teaching purposes. Lots of facts though. But still, if you’re not up on your medical terminology you might miss a lot of good info.

I’m still on a mission to find some informative, short, layman-speak vids. I might end up making some. We’ll see. 🙂

 

 

Video killed the radio star… *UPDATED-with link*

Video killed the radio star… *UPDATED-with link*

But not the 80’s tv and movie stars.  What do George Wendt, Jason Alexander, Tonya Harding, Philip Michael Thomas (Tubbs), Kelly McGillis, Katerina Witt, Roger Moore, Ricki Lake, (I’m not done yet!) Corbin Bernson, Lou Ferrigno, **Dolph Lundgren, Robert Englund (Freddie Kruger-eeeek!), Darryl Hannah and Peter Falk all have in common???  Singing! This rockin video, Let it Be. No really, let it be. I hope you enjoy this as much as I did.  Wait for it….wait for iiiiit…AIR GUITAR! Weee Hooooo!!!  Enjoy!

Oops, I didn’t know I couldn’t use the video-they have the embed code right there under it…

Anyway, here is the link to view it on You Tube. Enjoy!       Let it Be

**Does Dolph look exactly the same as he did back in the day?? He actually looks a little bit younger to me.

Make Juvenile Myositis A Memory!

Make Juvenile Myositis A Memory!

Pepsi is hosting a contest and is giving away 250K to the winner! I’m supporting Make Juvenile Myositis a Memory by The Cure JM Foundation.  About 5,000 kids in the US are affected by this disease, putting it in the ‘rare disease’ category. But just because that number isn’t astronomical, doesn’t mean that they don’t need the funding. These kids are suffering with a painful, debilitation, potentially life threatening disease.

Here’s a video about Emma’s story with JM-

Will you please vote with me and help these kids have a chance at some research grants?  You can go to the Pepsi site and vote at http://www.refresheverything.com/makejmamemory and also on Facebook at the Pepsi Refresh Voting App. You can vote once each day on each site for this cause, but you get to vote 10 times in each day if you have other causes you support.  Thanks in advance, we really have a chance guys. We are in 12th place right now with over 1,000 applicants and there is 7 days to go! Please vote each day if you can.  Thank you!

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

This video is by Lisa Copen, founder of Rest Ministries; a Christian non-profit for the chronically ill.  Rest Ministries puts out Hopekeepers Magazine as well as hosting a social networking site called Restministries and Hopekeepers Sunroom.  I’m a big fan of Lisa, who started this all up on her own while battling crippling RA.  If you check out the site you’ll find a bookstore that has some really good books on chronic illness, invisible illness, and more. She’s definitely one of my inspirations, one of my heros!

OK, here’s my disclaimer.  This is not a paid advertisement for any of the above. This post is my opinion, from my perspective.  With that said, here ya go.

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Until next time

Have lupus? The Lupus Alliance of America needs your help

Have lupus? The Lupus Alliance of America needs your help

In the beginning of my illness, I was told that I had lupus. I immediately went home, cried, then read everything I could get my hands on. I was online reading medical journal material, lupus blogs, lab reference sites, everything and anything (except for sites with no reputation, and the ‘cure all’ sites, ugh).

I joined a support group for people with lupus and friends and family of lupies. We shared stories of pain, grief, frustration, triumphs, symptoms gone mad, remissions, and bonded because of a common link-chronic invisible autoimmune disease: lupus. I have never in my life met so many strong women. Of course when I got sick I felt very alone. I soon found out that there were thousands of women and dozens of men on this site who were going through, or had gone through everything I was experiencing. I learned how to stand up for myself at the docs, how to keep records and manage them, find out where to look for lab explanations and the many acronyms, and most of all I learned that I COULD survive this. I could even conquer it some day. After about a year and a half, I let go of that group. It wasn’t because I didn’t enjoy it anymore, or that the docs told me they didn’t think it was lupus. It was just time. As I was leaving, dozens more were joining. Each one as scared as I was that first day in the room.

I will always advocate for a cure for lupus. Whether I have lupus or not it has a place in my heart forever. It is such a devastating disease, and was one of the most overlooked.

Now lupus is finally getting out there getting talked about and people in the entertainment industry are advocating for research and a cure. Say what you will, but when famous people stand behind a cause, people listen. Lupus voices are being heard. And a new drug! The first one in 50 years!!! Can you believe that? 50 years. It’s just unforgivable that it was ignored for so long, but thank God there is a new medicine.

We should all keep talking and bringing awareness to this disease and other autoimmune diseases; Multiple Sclerosis, Ankylosing Spondylitis, Antiphospholipid Antibody Syndrome, Graves Disease, Chron’s Disease, Dermatomyositis, Meniere Disease, Rheumatoid Arthritis, Insulin dependent Diabetes, Mixed Connective Tissue Disease, Schleroderma, Myasthenia Gravis, Ulcerative Colitis, Cardiomyopathy, Addison’s disease, Vasculitis and many, many more.

I’m gonna stop here and just ask, if you have lupus or are a parent of a child with lupus, will you please take the survey? It’s put out by The Lupus Alliance of America, it takes about 30 minutes and it’s results will help them learn what people with lupus are in need of, and the data will help spread awareness and speak of what effects lupus has on the people with the disease. Remember, awareness is key. It’s not going to be able to be swept under the rug anymore. It needs immediate attention, more funding for research to find a cure. Check this statistic out, it’s from the AARDA site

NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).(AD: autoimmune disease)

You can go directly to the survey by clicking on the survey logo below.  At the bottom of the page is a link to the Lupus Alliance of America’s website.  Thank you.

Until next time,

2michelle


Survey

In the last ten years Lupus has finally started to get the attention the over 2 million Americans who suffer from it have long dreamed of.  From garnering special focus at the National Office of Women`s Health and the Office of Minority Health, to National Awareness campaigns and more research on lupus, and the development of new medications to treat lupus, those living with the disease are more encouraged than
ever before. But more work is yet to be done.

This is a very important time for lupus research and the Lupus
Alliance of America needs your help. To further the dream of greater public awareness, much needed government support and diligent research into the cause, cure and treatment of lupus, The Lupus Alliance of America, its affiliates and L.I. CW Post have designed a voluntary survey to help gather statistics to assist them in achieving those goals.

JC VanderPutten
Lupus Alliance of America

http://www.lupusalliance.org


The Power of 10

The Power of 10

I am bed-bound at the moment and pretty darn low.  I have written and revised and rehashed a post until is was about 2 sentences long to cut out all of my whining and/or negativity as my body is really kicking the crap out of me.  I’m just going to post this awesome video about Erica.

The Arthritis Foundation has a campaign called the Power of 10.  You watch the video, forward it to 10 people, and give a gift of 10 dollars.  Let’s spread the word.  Just click on the Power of 10 link and check it out.  What a really great simple way we can all make a difference.  God Bless.

Thanks for hanging in there with me,

2michelle

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