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The Ice Bucket Challenge for ALS is all the rage right now. Hardly a day goes by that I don’t see a post on my personal Facebook page with someone pouring ice over his or her head and daring someone else to do it. It seems that every celebrity is getting on board ranging from Bill Gates to Lady Gaga. To date, over $22 million has been raised by this strategy.[1] This got me thinking about why RA and related autoimmune diseases can’t get this sort of public attention.

Amyotrophic lateral sclerosis (ALS) is also known as Lou Gehrig’s Disease after the famous baseball player. According to the ALS Association, 5,600 people are diagnosed with ALS each year in the United States and it is estimated that 30,000 some people currently live with the disease.[2] It is true that half of all people diagnosed with ALS will die within a few years and it is a most devastating disease.

However, the impact of RA on Americans is vast compared to many other diseases. Over 1.5 million Americans suffer from rheumatoid arthritis and upwards of 23 million suffer from an autoimmune disease.[3] Arthritis is the leading cause of disability and work limitations in the United States. The financial impact on the workplace and personal lives of those affected is close to 100 billion dollars annually. There are over 10,000 arthritis related deaths every year. [4] The direct healthcare costs of autoimmune diseases are estimated at $100 billion annually compared to $57 billion annual for cancer.[5] Autoimmune diseases receive much less research funding annually than cancer – about $800 million dollars in research funding every year compared to all cancers funding at $7 billion.[6]

There are many diseases worthy of public attention and research funding. And ALS is certainly one of those. But I am frustrated by the lack of public attention and funding for autoimmune diseases in general and RA specifically. Can’t someone come up with a promotion for RA that will grab the public’s attention?

[1] http://www.alsa.org/news/media/press-releases/ice-bucket-challenge-081914.html

[2] http://www.alsa.org/about-als/who-gets-als.html

[3] http://www.aarda.org/autoimmune-information/autoimmune-statistics/

[4] http://www.cdc.gov/arthritis/data_statistics/arthritis_related_stats.htm

[5] http://www.aarda.org/autoimmune-information/autoimmune-statistics/

[6] http://livingwithra.wordpress.com/2013/01/31/research-funding-priorities-for-rheumatoid-arthritis/

Hardly a day goes by on the rheumatoid arthritis Facebook site that a person doesn’t mention their persistent battle with fatigue. It’s one of the most frustrating symptoms of RA and there’s no treatment that directly affects it.

Fatigue is a common problem seen is almost all autoimmune diseases.[1] Your body feels completely wiped out, energy levels are low, it’s hard to move, and your cognitive function is poor.

Read the rest of the article at http://rheumatoidarthritis.net/living/ra-fatigue-complex-poorly-understood/

In a recent post on the rheumatoidarthritis.net Facebook page, a person mentioned that they had been treated for RA with a long-term antibiotic. This fosters an interesting, oft-neglected, scantily researched, and misunderstood treatment option. It is grounded in the idea that bacteria are a causative agent of rheumatoid arthritis. In an earlier post, I discussed the three currently accepted hypothesized causes of RA – 1. an environmental trigger, 2. a genetic susceptibility, and 3. a so-called “leaky gut”. The environmental trigger could apply to the notion that bacteria actually cause RA.

Read the rest of the story at…http://rheumatoidarthritis.net/living/antibiotics-treatment-ra/

About the time I first ventured into a rheumatology clinic after being referred by my general practitioner, I had been battling a nasty case of hives for the previous year or so. The itching drove me crazy at times and I took an over-the-counter antihistamine to control it. My medical record still lists urticaria, the medical term for hives, as one of my “conditions”. The referral was based on traditional RA symptoms but when my rheumatologist learned about the hives, he mentioned that it was probably related to RA since it all involved the immune system. In a previous post, I outlined how RA can impact parts of the body other than joints and there are several skin issues that are related to rheumatoid arthritis.

Read more at…http://rheumatoidarthritis.net/living/skin-issues-associated-ra/

If you have RA you should consider participating in research on the disease. The National Data Bank for Rheumatic Diseases (NDB) is the largest patient-reported research data bank for rheumatic disorders in the United States. As a RA patient, you can participate in their ongoing studies about the impact of the disease. They give reports at conferences and publish results in peer-reviewed journals. Participation is easy and can be done online. They send a reminder email to complete the survey on a regular basis and they provide a copy of your personal results. Results are confidential. Why should you participate? According to the NDB frequently asked questions website,

The primary reason people give for NDB participation is that they want to contribute to medical research that may help others with their disease. With a debilitating disease like arthritis or other rheumatic conditions it can sometimes be difficult to volunteer in a traditional setting. NDB research allows you to volunteer in an important way. By learning about your condition over time, we hope to give researchers the tools to improve treatment for people with rheumatic conditions and improve their quality of life.”

Please sign up today…http://www.arthritis-research.org/join-research/joining-ndb-research-rheumatoid-arthritis

 

The Impact of RA on Men

I’m the only male Patient Advocate and Moderator on www.rheumatoidarthritis.net and the corresponding Facebook page. There is a great page on RA and Women’s Health on our website but no corresponding page for men. Of all the people who visit the Facebook page, only 15% of the people reached were men and only 9% of the people who actively engaged by liking, sharing, or commenting on posts were men. All of this is not too surprising given the fact that the ratio of women to men with RA is about 2 to 1.[1] But with approximately 1.5 million people in the United States with RA[2], that would mean that almost half a million men suffer from RA.

When it comes to autoimmune diseases like multiple sclerosis, lupus, scleroderma, rheumatoid arthritis, and Sjogren’s syndrome, women seem to bear the brunt of these diseases in terms of proportion of people impacted. Genetics, behaviors, and hormones…

…read more at http://rheumatoidarthritis.net/living/impact-ra-men/

In an earlier post, I outlined how RA can impact much more than bones including many organs and soft tissues. One group of soft tissues that can be damaged by RA includes those involved with the musculoskeletal system. The musculoskeletal system involves a complex interaction between muscles, bones, joints, and various connective soft tissues – all which can be the target of RA.

Erosion of bone tissues in joints is on of the trademark symptoms of rheumatoid arthritis. Through complex autoimmune biochemical processes, the body’s immune system attacks it’s own tissues like it was a foreign invader. A cascade of signaling chemicals promotes the production of bone cells called osteoclasts that erode bone tissue and surrounding cartilage. This kind of gross damage…

Read more at http://rheumatoidarthritis.net/living/attack-on-connective-tissues/

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