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Category: Advocacy

Starting to write again. I think.

Starting to write again. I think.

I have just done nothing with this blog for so long. I’ve thought about just shutting it down, or letting it float in the inter webs forever; my rants forever floating…hahaha. I’ve got the itch to write again. The excitement that builds up when you think about it, changing blog themes incessantly getting all pumped up to write something, anything!

That’s where I’m at right now. I know that I want to jump back into advocacy again: I’m SO tired of dermatomyositis getting no play out there in the land of awareness. Bratty foot stomping here. So, if I want things to change I need to try and change them. And here I am. ??

 

Here’s a link to a depressing article about DM and the onset of cancer with specific antibodies present and lots of very scientific-ey words. Bam!

and here’s a picture of a cute puppy. Just because. 

This cute doggy was found at The Meta Picture. Ok, I’m going to read for a while and crash. Big time Friday night over here!!

 

 

 

I support rare disease day

I support rare disease day

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Rare disease day is here! This is the one day where I can celebrate my uniqueness. With a bunch of other uniquers. Haha! It’s nice to talk to people who have DM and get that ‘uh huh’ and ‘oh yah!’.

Even though the word rare means

rare1
re(?)r/
adjective
  1. 1.
    (of an event, situation, or condition) not occurring very often.
    “a rare genetic disorder”
    synonyms: infrequentscarcesparse, few and far between, thin on the ground,like gold dust, as scarce as hen’s teeth;

    we still have a large amount of people with rare diseases. I think it’s like 30 million people in the US have a rare disease and there’s around 7, 000 rare diseases on the list. It makes it hard to get funding for research, hard for people to connect with others with their same condition. I read this somewhere (don’t quote me on this) but I think it said like 95% of rare diseases don’t have one FDA approved treatment for their disease.  That’s just nuts.

    I’m going to link a few places to check out, if you’d like to spread the word, read up, or meet some people like yourself. 🙂

     

    National Organization for Rare Disorders

    Rare Disease Day USA

    World Rare Disease Day, The Global Gene Project

    Offices of Rare Disease Research

    The Voice of Rare Disease Patients in Europe

    Eurordis Rare Diseases Youtube Channel

    I hope you all are having a great day. I’ll be back to blog soon.

    Until next time,

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.

 

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?

 

 

 

 

 

 

 

 

 

 

 

Today Is World Arthritis Day, Let’s See Your Wave!

Today Is World Arthritis Day, Let’s See Your Wave!

Hey all, today is World Arthritis Day. A day of awareness for people with rheumatic disease. There are more than 200 rheumatic and musculoskeletal diseases (RMD’s). This year’s theme is ‘Move to Improve’. 

You can click on the pic above and also the globe in the sidebar and be taken to the World Arthritis Day website. There you can find out more about today, get resources for yourself or to educate your loved ones, and have an opportunity to wave for WAD!  You can submit your picture of you waving for World Arthritis Day. The photos are being put into a montage and the goal this year is 100,000 pictures. Countries are competing to see who has the most waves. =) You can see the tallies at the website.

I think this is a fun idea and we’ll be ‘waving’ here and sending ours in. I’ll be sure to post it here when we do. They’re accepting photos until October 31st, so it’s not too late to be involved.  Anyone can wave; you don’t have to have a disease, you can wave to support your friend or family member.

Waving is a small physical activity, but a big gesture for people with rheumatic disease.  It also ties in with this year’s theme which is movement, and we all know this is SO important. Now that doesn’t mean running a marathon, unless you can and um, like to run…That’s just something I never did enjoy even when my muscles were my own. But light exercise is very important to keep your muscles from atrophying.

My mantra is ‘baby steps, baby steps’. There was a time when I couldn’t walk more than a few feet, and even then had to rely on a walker. The couple of years of me being immobile really did a number on my muscles. My disease is a muscle-wasting disease to begin with, so I really need to stay as active as I can. Something I have not been so successful with lately btw, but that’s the good thing about a new day. A day to try again.

Stop in at the website. Click the counter to ‘wave’ in spirit. Let me know in the comments if you did, I’d love to see them!

Until next time,

 

 

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. 🙂

 

 

Please Stop The Pain For Chronic/Intractable Pain Sufferers

Please Stop The Pain For Chronic/Intractable Pain Sufferers

I know, I’ve been invisible for quite a while now.. Still battling depression, it’s an ongoing thing. I need to get back ‘out there’ and posting is one of the things I need to do to feel good. I have a list of people I need to call/write/hug, and a house to clean, ha!
In an effort to get back into the swing of things, I joined a fantastic site called Chronic Intractable Pain and You. It is an amazing source of support, and a place for advocacy for chronic pain sufferers. I’m going to make this post short and sweet, and place a link to sign a petition. Please at least check it out, read it and if you agree, please sign. We need 10,000 signatures and are at around 900.
Thanks in advance, and I will be back!

Please click on the picture below to take you to the petition =)

Make a wish!
Cure JM a finalist! 250,000 for research!!!!

Cure JM a finalist! 250,000 for research!!!!

I just wanted to drop a quick THANK YOU for all of you out there who diligently texted and facebooked and on-site voted for Cure JM to win in the Pepsi Refresh Challenge.  Oh my gosh, I still can’t believe we won!!!!!  It’s amazing, wonderful, incredible, and oh so needed! Thank you. All the children with JM have some more hope for a cure with the 250,000 prize money to go towards research.

Love to you all,

Pepsi Refresh Project; Cure JM in 4th Place!

Pepsi Refresh Project; Cure JM in 4th Place!

Introducing the Pepsi Refresh Project. Pepsi i...
Image via Wikipedia

I posted earlier about Cure JM having a chance at a $250,000 grant from Pepsi and we still do! Voting is open until the end of August. In July we were in 12th place and as of today we are in 4th. Woot Woot!!  The top two will each receive the grants.  This is so amazing, it is truly within our grasp if we all vote and pass along to our friends to vote too.  Will you please take a moment and text to vote, stop in at Facebook and vote and please ask your fb friends to do the same.  It is such a worthwhile cause, I know firsthand the pain and crippling effects this disease has and I can’t even imagine a child having to go through any of it.

To find out more about Juvenile Myositis and the organization Cure JM, check out the video and follow the links below to vote. Pepsi is giving us an amazing opportunity to help our kids with JM and we are so close! Thank you to all of you who are following this and voting. God Bless!

A message from the facebook group:

Thanks for making a difference by helping Cure JM move into 4TH PLACE in the Pepsi Refresh contest, where we are competing with over 400 organizations for a $250,000 grant.

We need to be in the TOP TWO at the end of August to win this grant. Every penny of this grant will go towards research, including an important JM genome study and a cardiovascular risk study in patients with JM. The remaining funds will go towards the Cure JM Program of Excellence research center in Chicago.

We would like to share a recent Facebook post from a JM family, who has played an integral role in the Cure JM Foundation:

“Know how I remember to vote everyday???….Inserting Mason’s feeding tube, giving the IV meds he needs this morning to keep him alive, plus the other meds used to strengthen his depleted bones, and the meds to lower his blood pressure so his enlarged, calcinotic heart will hopefully get better; replacing the pain patch…”

Please vote so that Mason and all of the children with JM can have hope for a better future. Vote THREE times each day, everyday to help Cure JM:

– Text Vote to Pepsi (73774) Type: 100850 to vote *(Stnd txt msg rts apply)
– Vote via FB app: http://www.facebook.com/l/0a580WbtmPvlJZ9FqZauzEfO3eg;bit.ly/CureJMonFB
– Vote for our entire “Kids to Win” team at: http://www.facebook.com/l/0a5806ZfUlE2jdhvEYHUpKnXhvA;pep.si/CureJMKidstoWin4

Sign up for Daily Voting Reminders (and be entered into a contest to win a FREE iPad if Cure JM wins!), please register here: http://www.facebook.com/l/0a580eNdDWUEzr_ZtywByGjqW2w;www.curejm.org (Note: Names and emails will NOT be shared with anyone and are only used for daily voting reminders).

Cure JM Partners in Pepsi Gulf Projects
These groups in the Gulf Projects category are heavily supporting Cure JM. Thank them by using your additional votes in the Gulf categories, which are completely separate from the “regular” Pepsi Refresh voting. Voting links for the three groups we have aligned with are as follows:
http://www.facebook.com/l/0a580NC02G4Vkimv5W1P6uJBcgA;gulf.refresheverything.com/plci
http://www.facebook.com/l/0a580iI6HECgEjWhCqQJHh4J3Kw;gulf.refresheverything.com/mhc
http://www.facebook.com/l/0a580W_EmhYhDIGCaajmFqVCDLw;gulf.refresheverything.com/homesofhope2

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