You guys: this is important! This is exciting! This is not an ordinary book review! This book review is special in two regards: 1) it was authored by a dear friend, Kelly Young, who worked tirelessly and put countless hours into creating this powerful and compelling resource, and 2) it conveys the most important information that needs to be communicated to improve the lives of people with rheumatoid disease -- including myself, my stepdad, several friends, Kelly herself, the online #rheum community that has meant so much to me, and countless others who live with this disease.

Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease takes a comprehensive look at the illness commonly referred to as RA (rheumatoid arthritis), with each chapter underscoring the inadequacy and dangers of referring to this disease as a "type of arthritis," with facts about the dangers of this disease that often exist in the extra-articulate (non-joint) aspects (heart, lungs, vascular system, eyes, etc). Kelly walks readers through a brief history of our knowledge of rheumatoid disease (or, RD - the preferred term for the disease by many patients and rheumatology professionals), then takes a careful look at what RD is and what RD isn't. The book proceeds to outline the serious dangers of rheumatoid disease, the systemic nature of the illness and multitude of symptoms and manifestations that patients may experience outside of the commonly associated joint symptoms.

With a plethora of footnotes and references to existing research, Kelly has truly done her homework and makes it easy for the reader to find follow-up readings. Rheumatoid Arthritis Unmasked is a must-read for anyone who is affected by rheumatoid disease -- whether you have the disease yourself, have a loved one with RD, or are a professional involved in rheumatology. Kelly does a fabulous job of balancing the content so that it is relevant and properly documented for healthcare professionals, yet is also comprehensible to the layperson.

For those not familiar with many of the medical or scientific terms used in this book, there is a very helpful glossary in the back. She encourages people to not be discouraged if they don't understand every term used: the important information will still be evident. It would be a great reference resource for patients and caregivers to be able to easily look up more detailed information about this disease -- and arming them with the knowledge they need to advocate for better care.  There are so many aspects of rheumatoid disease that I did not know existed when I was diagnosed. This book can help patients connect the dots between seemingly unrelated symptoms, and can help detect disease activity early, so that patients have the best chance to get early treatment (which is also the best chance for positive outcomes). It's informative for both the newly diagnosed and those with longstanding disease. After living with this disease for 13 years, and being involved in disease awareness and patient advocacy, I still learned a lot!

I read the Kindle version of the book, then ordered a paperback! It just arrived on Tuesday!

The book is available for sale on Amazon (paperback or Kindle):  http://bit.ly/RAunmasked  - get your copy today! The physical book is awesome, but the Kindle version is really neat because you can do a search. So, if there was a topic that you wanted to come back to, it's really easy to find. You can also do digital highlighting and save those to reference back to!

If the content of this book is taken to heart, it has the potential to truly change the landscape for rheumatoid patient care -- even saving lives -- and to improve the outlook for this disease, providing some powerful action steps that we can take right now. I hope that everyone who reads this book recognizes the need for a name change so we can finally drop the "a" word (arthritis), unmask the true nature of this disease and increase public awareness for RD. This is a huge part of what the Rheumatoid Patient Foundation (RPF, of which I am currently the Vice President and Kelly is president and founder) is working toward. I'd encourage you to also follow the work of RPF and help support our mission of improving the lives of people with rheumatoid disease (PRD).



A big congratulations and THANK YOU to Kelly for doing the impossible and publishing this phenomenal resource -- I am so grateful for her and her leadership in spearheading this movement to uncover the truth. I hope that my friends and family will take the time to read it and gain a better understanding of this disease that I will live with for the rest of my life (unless we should be so fortunate to find a cure in my lifetime). Misunderstandings abound and knowledge is truly power. Thank you to all my friends and family, and especially my loving husband, Tom, for supporting me and encouraging me on my health journey.

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Help Spread the Word!

Please help us spread the message that rheumatoid disease is a serious, even life threatening illness, and not a type of arthritis.

Below are a few of my favorite excepts and facts from the book. Please read consider sharing these or the images in this post on your own social media profiles to help unmask RA and get the truth out about rheumatoid disease!

Quotes from the book:

"Lives can be saved by simply recognizing that extra-articular disease is not rare and that rheumatoid disease exists beyond arthritis." (RA Unmasked, Chapter 11)

"No other single action could do more to advance public understanding of what the victims of this disease endure than to call it by what it is: a disease." 
(RA Unmasked, Chapter 11)

"The question is, if patients do not have 'articular RA' (articular arthritis), what do they have? Since 'articular' means 'related to joints' and 'arthritis' literally means 'inflamed joints,' Mikuls et al. seem to state that the patients studied have arthritis that is not articular or 'non-joint joint inflammation.'" (RA Unmasked, Chapter 4)

“Patient complaints of extra-articular symptoms often go unaddressed, one reason that the mortality rate of RD has not significantly improved. Patient care could be improved if medical professionals were made more aware of the need to address extra-articular disease.”  (RA Unmasked, Chapter 4)

*Note: this post is part of a Blog Carnival, coordinated by RA Warrior

When challenged to think about what Rheumatoid Awareness would mean to me, personally, I had to give it some thought.  There are a lot of general positive outcomes that I think would come from greater awareness of rheumatoid disease (also known as rheumatoid arthritis).  Greater understanding of this disease would:

• Help people with rheumatoid disease (PRD) to be better understood by others -- including family, friends and medical professionals
• Prevent misinformation from being published so rampantly in the media
• Make it easier for PRD to get the accommodations and assistance they need
• Improve healthcare coverage and quality of care
• Underscore the need not only for different and better treatments, but for a cure, and hopefully prompt additional research funding

It's February 2nd.  Groundhog Day.  And now, Rheumatoid Awareness Day!  Today marks the first time ever that there has been a day set aside specifically to promote awareness of rheumatoid disease (previously known as rheumatoid arthritis).  The Rheumatoid Patient Foundation (RPF) announced the establishment of this day last month, and has published numerous ways that people can get involved.  This holds a special importance to me, as I was diagnosed with rheumatoid arthritis (RA) or rheumatoid disease at the age of 19, and have been living with the symptoms and treatments for it for the past 8+ years.  I am fortunate that the currently available treatments have worked pretty well for me over the years, but it has not been without its ups and downs.  You can read more about my journey with rheumatoid disease by clicking here.

There are many challenges to raising awareness of rheumatoid disease -- you can read my discussion on that here.  But a big part of what needs to be done is simply educating the public on the truth of this disease.  The term "rheumatoid arthritis" has done a huge disservice to the disease by making it sound like a type of "arthritis" (typically associated with osteoarthritis) instead of a systemic autoimmune disease that has arthritis as one of its symptoms.  What I want to do here is just share some basic facts about rheumatoid disease for those who may not know what it is.  The RPF has put together some great topline information:

•  SHARE educational and awareness images via social media: click here for a list of resources to share

•  JOIN in Twitter Chat TODAY: February 2nd at 7 p.m. EST with special guest Dr. Jeffrey Curtis, Division of Clinical Immunology and Rheumatology at University of Alabama, Birmingham.  Join the conversation on TweetChat.

•  MATCHING DONATION - Make a tax-deductible donation to the RPF between January 22 and February 5, 2013 and your gift will be doubled by Crescendo Bioscience!  Crescendo has offered a matching donation up to $10,000!  

•  GRAB Awareness Gear in the new RPF store!

The Rheumatoid Patient Foundation (RPF) has announced the establishment of the first ever Rheumatoid Awareness Day to promote education and awareness of rheumatoid disease (aka rheumatoid arthritis).  There has never before been an awareness day for RA, and this will be a huge step toward increased education among the public (See Also: RA Un-Awareness).  In my opinion, this day will be extra fun because it falls on February 2nd -- Groundhog Day!

I have my qualms about Groundhog Day, as you can read from my post last year, but it ties in perfectly to rheumatoid disease.  Each year on February 2nd, the groundhog comes out of his hole to see if he can see his shadow -- we use this as a way to predict how much winter we have left for the year.  If he sees his shadow, there's supposedly six more weeks; if he doesn't, then spring is right around the corner.  I ranted last year about how backwards this seemed and how it really didn't make a difference in Michigan, anyways.  This inability to predict the weather and goofy reliance on something as obscure as a groundhog's shadow goes hand in hand with the inability to predict the outcomes of rheumatoid disease.  At present, there is no way to predict how quickly or aggressively the disease will progress or which treatments will be effective for which patients.  For some, the disease is mild; for many it is severe and progresses rapidly.

Because rheumatoid disease can progress so rapidly and deformities and damage can happen quickly, it is essential that patients see a rheumatologist as soon as possible after the onset of symptoms.  Early and aggressive treatment has been show to provide the best chance at remission.  This early "window of opportunity" can be compared to the 6-week window of time that the groundhog's shadow is presumed to predict.

Another analogy that can be drawn is to the groundhog's hole or his shadow.  There's a sense that the truth about rheumatoid disease has been shoved in a hole and left in the shadows, as people mistake "rheumatoid arthritis" for simply achy joints and misinformation gets perpetuated in the media.  It has been so difficult for rheumatoid patients to push through the clutter and be able to be understood and have their illness understood as a destructive autoimmune disease.  Having a Rheumatoid Awareness Day will encourage people to share the truth about this disease and help bring it out of the shadows, into the light for the public to see.

You don't have to have RA to help spread education and awareness!  Click on the RA info button in the sidebar for some basic facts about rheumatoid disease.  Plus, head over to the RPF website for tips on how you can get involved.  It can be as simple as a Facebook post or a Tweet sharing facts about rheumatoid disease or linking back to the RPF website or press release.  Anything you can do to spread awareness and accurate information is a blessing to me and patients like me!