Slacktivism Is Not Enough

Imagine that your doctor refers you to a specialist.  It takes months to get an appointment, but eventually the specialist gives a diagnosis:  You have a highly inflammatory disease which often leads to joint destruction, deformity and loss of function.  Chronic pain, disability and excess mortality are unfortunate sequelae.” (cf)

Stunned, you share your diagnosis with a few friends and coworkers.  Obviously misunderstanding, one shrugs, “Oh, I have that in my little finger.”  Another replies, “Just take an Aleve.”  As you struggle with your new regimen of doctor’s appointments and prescriptions medicines, people impatiently demand, “Aren’t you better yet?”

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As someone who never changes my Facebook photo and ignores all gimmicky “post this to raise awareness…” pleas, last week I found myself in the interesting position of promoting IAAM’s FB Post Your Numbers awareness campaign.

Post Your Numbers was designed to spread the word that osteoarthritis is very different from rheumatoid arthritis – both in how it’s caused and in who is affected.

Doctor Grumpy graciously posted a public service announcement to help spread the word about our FB awareness campaign.  His readers jumped in saying that awareness isn’t enough and asked how people can really help.  They wanted facts, and they want to know what they can do.

Facts

Fact:  There are over 100 types of arthritis.  They are different.

Fact:  Of those 100+ arthritic diseases, seven of them are considered autoimmune arthritis.  The person’s immune system kicks into overdrive and instead of simply attacking foreign invaders like it is supposed to, it attacks its body’s own tissues.

Fact:  Autoimmune Arthritis is often treated with chemotherapy drugs.

Fact:  Autoimmune Arthritis isn’t limited to pain in one or two joints.  These are systemic diseases.  In addition to multiple joints, tendons and ligaments are affected.  Organs can be destroyed.  Some people lose their eyesight due to autoimmune arthritis.  Others lose their hearing.  The skin can be affected.  Lung disease can be caused by autoimmune arthritis, as can heart disease.

Fact:  Autoimmune Arthritis can strike at any age.  It is not “an old person’s disease.”

Fact:  Autoimmune Arthritis symptoms can lessen and flare without warning.  A person can feel fine in the morning, but be unable to walk a few hours later.

Fact:  A great amount of overlap exists among these diseases, and sometimes doctors have trouble telling which form a patient is afflicted with.   Patients are sometimes told, “It doesn’t matter which one of these diseases you have, because they’re treated the same way.”

Fact: There is no cure.

To Learn More:

Rheumatoid Arthritis affects multiple joints symmetrically.  Typically both sides of the body are affected:  both wrists, both hands, both ankles, both feet…  There are many links in my sidebar leading to information about RA.

Psoriatic Arthritis is very similar to rheumatoid arthritis, with the addition of the skin involvement of psoriasis.

Ankylosing Spondylitis is marked by bones of the spine fusing to one another (from the disease, not due to a surgical procedure).  As noted by one of Doctor Grumpy’s commenters, there are forms of spondylitis that don’t qualify as AS.  It is my personal opinion that diagnostic criteria will eventually change and that these diseases will eventually be diagnosed and treated soon enough that fusion can be prevented.

Systemic Lupus Erythematosis is probably the best known of these diseases.  Fifty years ago, a teenage girl diagnosed with lupus wasn’t expected to live to 20.  That is no longer true.  Great treatment strides have been made, but there is still a long way to go.

Sjögren’s Syndrome attacks the mucous membranes and moisture-secreting glands.  Dry eyes and mouth are early symptoms.  Gritty eyes feel as if they have sand in them.  People’s mouth feels so dry that it’s difficult to talk or swallow.  This sounds innocuous, but imagine what it would be like if these symptoms never went away.

Mixed Connective Tissue Disease - sometimes called undifferentiated connective tissue disease – is the diagnosis when a person has symptoms of lupus, scleroderma and polymyositis.  RA symptoms can occur, too.  Sometimes this is called “overlap syndrome.”

Adult Still’s Disease  In addition to the joint pain that comes with all autoimmune arthritic diseases, Stills is noted for high fevers and rash.  The brief post I wrote introducing Stills is here.

Juvenile Arthritis is the diagnosis when one of these diseases occurs in a child under 16 years of age.

Donate

We need a cure.  Donate to organizations that fund research looking for a cure for the different forms of autoimmune arthritis:

Spondylitis Association of America

National Psoriasis Foundation

Lupus Foundation of America

Sjögren’s Syndrome Foundation

Arthritis Foundation

The Spread of Misinformation

One of the challenges of receiving a diagnosis of rheumatoid arthritis is that very few people know what it is.  Rheumatologists recognize that, and are starting an educational campaign.  The International Autoimmune Arthritis Movement (IAAM) is also working to educate the public.  Part of that education is addressing falsehoods that appear in the media.

A national television show recently stated that obesity can have medical complications, “including rheumatoid arthritis, hypertension and heart attack.”  This, obviously, is false.  Obesity is not a risk factor for RA.

Since this is not a show I watch, I was hesitant to get involved, however there is now a transcript online confirming that he did, in fact, say “rheumatoid arthritis.”  I even grabbed a screenshot in case they decide to take the page down (as has happened with other websites in the past).  A link to the show’s transcript is here.

I’d love to see a retraction and accurate information presented.  This could actually be a great opportunity to spread the word about the distinction between osteoarthritis and autoimmune arthritis.

Please email the show asking for a retraction of the erroneous information.  If you’re not sure what to say, a sample letter can be found on IAAM’s Facebook page.

You can also leave comments on the show’s webpage.  Be courteous; anyone can make a mistake – it’s how people respond to their mistakes that shows their true character.

Help spread the word that RA is not the same as OA.

Understanding – NOT

Imagine getting sick, pampering yourself so your body can recover, but staying sick despite your best efforts.  Finally you go to the doctor.  Usually the doctor figures out what’s wrong and provides a treatment plan, so you figure that in a few weeks you’ll be back to your old self, healthy again.

Now imagine that you didn’t recover.  Instead of returning to health, you return to your doctor.  Your doctor tells you that you have an incurable disease.  Untreated, your illness can result in kidney damage, heart disease, lung disease, and deformity.  Having this disease means that your life-expectancy is ten years less than it otherwise would have been.  Within five years you’ll probably be unable to walk.

“Fortunately,” your doctor adds, “in the past ten years, some new drugs have been developed.  They will not cure you, but for many people, these medications will postpone the deformity and organ damage.  If you’re one of the lucky ones who are helped by these medications, you might not need a wheelchair for another fifteen or twenty years.”

Unfortunately, you can’t take the new wonder drugs.  They’re extremely expensive, and you have to try the less expensive medications (the ones that result in the aforementioned debilitation) before insurance will pay to try the medications that have been shown to help.

Stunned, you try to deal with this tragic news.

You’d like a listening ear and a shoulder to cry on.  As you come to grips with your new reality, friends call.  They ask if you’re feeling better, or inquire how it went at the doctor’s office.  You’d like some sympathy and understanding.  Instead, people respond with:

  • Just take some ibuprofen; you’ll be fine.
  • You should take glucosamine.
  • Oh, I have that in my neck.  You should see my chiropractor.
  • Oh, I have that in my little finger.  I take tylenol when it hurts too bad.
  • Oh, I have that in my left knee.  I just take motrin.
  • Oh, I have that in my shoulder.  It’s not that bad.

The average person has never heard of autoimmune diseases.  They don’t realize that an immune system gone postal is nothing like the wear-and-tear that some people experience.  Gazing in the mirror, you discover your feelings reflected back:

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I wrote this post as a participant in IAAM’s 2nd Annual International Autoimmune Arthritis Awareness Scavenger Hunt, currently happening online at the IAAM Facebook page.  Several clues for the Scavenger Hunt will be posted around the web this weekend.  I am posting #5: Misunderstanding Autoimmune Arthritis.

As mentioned in the above post, those dealing with Autoimmune Arthritis often deal with a lack of understanding or sympathy about their disease.  This leads to your task for Scavenger Hunt Awareness Items for #5:  If you have Autoimmune Arthritis, what frustrates you most to hear?  A food or herb to try?  Home remedies? Or maybe it’s that “they have it too, in their knee”. 

To earn 5 Awareness points (that can be exchanged at the end of the online game for free Awareness merchandise), get or create a photo of this misunderstanding, then post it on IAAM’s Facebook page. You can post a picture of probiotics or be more creative and find a picture of someone pointing to their knee. You must post in the next 10 HOURS to earn your points.  Time’s ticking!

*IAAM stands for The International Autoimmune Arthritis Movement, which will soon become the 1st nonprofit in history exclusively benefitting Autoimmune Arthritis.