"My Autoimmune Story" video series on YouTube

Make a video for the cause! The below info is from the AARDA website. www.aarda.org/press_release_display.php?ID=88


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 ).

You have no idea how I really do not like the word "disease" at all - I just don't feel I am diseased, I don't even like my Graves Disease called 'Disease' - I have disorders [more than I'd like] not diseases.

That being said - I will pass this on to a friend who might be interested in doing a short video.

I read Kelli's sister's story years ago and must say, it is truly sad. She died so fast and so young! I think this is a great idea. Not sure if I'd have the nerve to make a video since I am still trying to convince family and friends that there is nothing wrong with me....can't admit the truth to anyone, so going public would expose me. I sure hope others do though!

Melinda - how bout that? I can manage to avoid the word 'disease' with every other illness BUT Graves. That annoys the heck out of me!

Sandi,

I think it just has a ring to it unfortunately. grave's disorder just doesn't sound right. I know what you guys mean though. When I do IVIGs or Rituxin, I sit in treatment with 30 cancer patients. Some of them are so sick, some probably only have months to live. It definitely puts these auto immune disorders into perspective.

Nope - Graves Disease does not have a ring to it at all - maybe a gong but certainly not a ring

I think Graves Disorder or plain old Graves sounds just fine! Sandi it is what you get used to - now go stand in front of the bathroom mirror and practice saying it my 2 ways!

sem40 I have passed on your thread to my friend.

It does put it into perspective, but chronic autoimmune disorders can be hard too. Some people with autoimmune disorders are debilitated and live with chronic pain for many years. Not only that, but people don't understand autoimmune disorders. When I was diagnosed with Lupus, a well-intentioned friend gave me a card that said "This too shall pass". That was 8 years ago and the damn thing is not going to pass. Ah well. Just a bad day.

Aww I'm sorry that you are having a bad day! I went on YouTube and looked up some of the people's stories. Very inspiring. I think it's great that they are trying to promote awareness about autoimmune diseases because not very many people understand them even though they are one of the leading causes of death for young women. It was really scary when I was watching someone's story and she said her friend thought RA was a made up disease.

One of my goals is to become more involved in promoting autoimmune awareness. I would like to start by making a video. However, I would like to be in a more emotionally content place with my ITP, which I feel is going to happen in the near future.

Melinda,

I think I will settle on plain ol' Graves.

I understand the issue with disease vs. disorder thing too. I always stumble over the words when I'm telling people about my autoimmune disorder. One of the first few times I had to explain it to a friend I remember they got very concerned hearing only "blood disease" and "AutoImmune Disorder" I think they thought I had AIDS. It was momentarily very awkward. It was another intro into the confusion and discomfort having a chronic health condition causes for those around me.

When I was first diagnosed I came across the "Advice for ITP Patients" PDSA youtube videos made by other ITP patients and it was really helpful to see other real people living with the disorder talk about their experience. www.youtube.com/user/PDSAorg

I really like that the AARDA is trying to bring together people with different disorders to tell their story to raise awareness for autoimmunity.

I think their website is awful though!

This is a great topic. Thanks for starting it!

I was digging around on Youtube and found some good videos:

www.youtube.com/watch?v=vlr5_xCYgQA

www.youtube.com/watch?v=QK7khFNQB2M

Interesting videos, Sandi. Any idea when the one with the dr. was made? She said there were 30,000 Americans with ITP. I wondered if that number sounded right.

I think I saw that it was made in 2012, so just last year. Yeah, I would think that number would be higher since the number of people with ITP is cumulative.