Medical Terminology that trivializes

[stephL]

I think the goal of terminology should always serve the best interest of the patients. What I'm struggling to understand today is why is it necessary to have a subcategory of secondary Sjs in those who have another connective tissue disease?  If I have been diagnosed with both RA and Sjs, why isn't my diagnosis Sjogrens with Secondary RA instead of RA with secondary Sjs? According to the link below, the waters are murky and there is no clear difference between primary and secondary Sjs. When I think about the word secondary and do a little word association, what comes to mind is something along the lines of a second class citizen. Wouldn't the term secondary tend to mislead doctors into treating Secondary Sjs less aggressively? Are there other diseases termed primary and secondary in a similar fashion?

http://www.ncbi.nlm.nih.gov/pubmed/20194453

Let's put the shoe on the other foot and assume that Secondary Sjs is a milder form of the disease. There are two types of Diabetes, Type I and Type II with Type II being the 'lesser' form. Why can't Sjs be categorized more objectively as Type I and Type II? Type A and Type B?

Does anyone else feel that this perpetuates the outdated belief that Sjs is merely a nuisance of 'just dry eye and dry mouth'? And what do you secondary folks think about this?

If I've misunderstood something or didn't explain my point well, please correct me. I'm having trouble with my language abilities today. And if my choice of words seems too emotionally charged, I admit it's really eating at me!

So far, I'm still being diagnosed as Primary. 

[olmphoto2]

I am sorry that this situation was so disturbing.

Perhaps on one front, you might find this information helpful...

In the medical world, 'secondary' disease does not mean less important.  Typically, it refers to a bit different set of signs and symptoms that may be also appearing along side of the presence of other disease states.  A physician does not dismiss 'secondary' disease as less important.  In fact, an individual maybe be more seriously ill overall.  Treatment may be more difficult.  A number of different avenues of therapy are often required to be explored for the attainment best results.  In 'secondary'  disease, the etiology (cause) of the problem and its interplay with other conditions that a patient has are, unfortunately, often not so clear.

http://sawaal.ibibo.com/health/what-primary-versus-secondary-sjgrens-syndrome-685413.html

[Linda196]

Maybe if you think of it as being "secondary" to autoimmune dysfunction as opposed to a "stand alone" issue it might make more sense.

The biggest reason Ra and Lupus (for example) aren't classically differentiated as primary and secondary is that they are usually well known and treated as if they are the whole target of the treatment...technically any autoimmune disease can be broken down that way, and my Rheumy often discusses case studies of "autoimmune dysfunction" with secondary RA/Lupus/SjS etc. Sometimes the list of secondary conditions can become very long.

As Olmphoto mentioned, in this case primary and secondary do not mean most and least important....more like individual or part of a group.

[stephL]

Thanks for your replies Linda and olmphoto. Forgive me for playing devils advocate, this is just a friendly debate here and please don't take it any other other way. You know me, I won't let our docs off the hook too easily! Linda if they mean to describe a stand alone disease, why qualify it at all? For instance, if I have Asthma, I don't have Primary Asthma. The Asthma and Allergy Specialists would not add that I also have Secondary Allergies or Secondary COPD. They would just say that I have Asthma and Allergies or Asthma and COPD. And why aren't RA and Lupus occurring alone described as primary?

I checked a medical dictionary and discovered that the terms primary and secondary are used to describe order of occurrence. That's plausible for Sjs, but if order of occurrence is being described, then wouldn't a third connective tissue diagnosis be described as tertiary? But as you point out Linda, they seem to be referring to any subsequent diagnosis as Secondary. However, their reasoning breaks down in cases where an Sjs patient develops RA later in life and in that case, Sjs would still be classified as Secondary to RA.

Websters Medical Dictionary

Primary
http://www.merriam-webster.com/medlineplus/primary
Secondary
http://www.merriam-webster.com/medlineplus/secondary
Tertiary
http://www.merriam-webster.com/medlineplus/tertiary
Comorbid
http://www.merriam-webster.com/medlineplus/comorbid

I googled Secondary Rheumatoid Arthritis and Secondary Lupus and I didn't find a single instance of either being described as being secondary to other connective tissue diseases.  Instead, connective tissue diseases are described as overlapping when they occur together. I did find this item about Sleep Apnea being described as Secondary and as a complication of RA. However, sleep apnea is not a connective tissue disease.

Sleep apnoea syndrome secondary to rheumatoid arthritis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1021277/

The way it appears is that except for Sjs, connective tissue diseases that occur together are generally described as overlapping diseases. There is no definition of the term overlapping in Webster's Medical Dictionary, btw. What I don't understand is why, among the connective tissue diseases would only Sjs being so consistently singled out as a Secondary condition instead of being described as overlapping?

I suspect that these terms came from a bygone era when Sjs was poorly understood and thought to be more of a nuisance than a serious autoimmune connective tissue disease.

Someone shoot down me down here if I'm wrong, please.

[eyeamdry]

Stephl-I agree with you.  I think you got some good answers though.  You gave an example of diabetes Type I and Type II.  My daughter has Type I and I'm not so sure that people really realize the difference.  If I say my daughter has diabetes, I always add that it's Type I and she wears an insulin pump 24/7. When she was dx with this at 27 years, I wish it could have been me.  I did not have Sjogrens yet, so she actually was the first of us to show disease. 

There is so much advertising about "diabetic meds" that most people think all you have to do is get off the couch and be active, maybe loose a few lbs. My dau went down to 87 lbs from 120 after her dx.  Sorry I hijacked your thread.  Lucy

[olmphoto2]

Often there is a difference in meaning between straight referring to a disease as "secondary______________(fill in the blank with a disease name)" OR talking about a condition that is secondary to something. In the later case, the 'to' is often implied and obvious to the medical practitioner.  In the first meaning, "primary_(fill in the blank)" may refer simply to a disease or syndrome (that is, a group of signs and symptoms that occur together and characterize a particular abnormality or condition) that have been known, studied and treated for some time in the medical community.  A secondary disease or syndrome may be one that is relatively more recently recognized as a similar condition.  Or such a condition thought to have a different cause (known or unknown). Or one with different treatment needs, different typical disease progression, seem to be seen in patients with some certain other conditions also, etc.  Often, these conditions called "secondary_______" are more serious on many fronts.  And yes, there are many, many  conditions that are referred to now as 'secondary ___________' .  Some are eventually recognized as completely separate diseases as more is learned about them.  Even so, they may retain the 'secondary' terminology.

There are some subtleness in play here you can see.  If a condition is secondary to something else, improving the primary condition could effect it, providing that the initial condition did not result in permanent changes. 

On the other hand, "Secondary ____" may simply be a title researchers use, at first, to work with groups of patients that seem to have very similar symptoms to what at a later time becomes labeled as "Primary _____".  "Secondary" is often more complex.  Researchers many want to study it for the very reason that these patients seem to have more severe disease and have certain specific other diseases too.  Hurray for researchers!

[stephL]

olmphoto, It's entirely possible that the field of Rheumatology intends to elevate secondary Sjs to a more prominent status when it's related to Lupus and and RA. The term Secondary Sjogrens  doesn't come across as a serious complication to a lay person like me though. To people unfamiliar with connective tissue disease, it probably sounds more like, "you have RA and a touch of the Sjs". I doubt that Secondary Sjs is treated more aggressively than Primary Sjs is, probably the reverse is true if RA and Lupus are the big focus. 

And Lucy, about the names for the two types of Diabetes, point well taken. They are vague names that lump together two distinctly different diseases. Type I Diabetes is essentially organ failure. I would call it Pancreatic Failure. Type II Diabetes would be more clearly understood with something like Insulin Resistance in the name. imho

All joking about the terminology aside, my point is that Sjs is a serious disease, even in those who have only their moisture producing glands affected. All patients deserve to have their disease named and described accurately so that doctors and lay people alike can understand and respond appropriately.

[DragonflyC]

The term "syndrome" is also an issue, in my experience: "Don't you just have a syndrome? It's not really a disease then, right?"

Dr. Ann Parke who spoke at the SSF seminar I attended said that she thinks of Sjogren's as "SLE of the mucus membranes." I feel like we'd get more respect if that (or something like it) caught on.