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Monday, February 18, 2019

What’s in a name, Spondylitis terminology

I Was Diagnosed, But Now I’m So Confused

It was actually February of 2016 when I got my diagnosis of Ankylosing Spondylitis. As you can imagine, I had no idea what that meant. That is, outside of the minimal information my Doctor provided me with. “It’s an auto immune disease that effects the back.” That’s the extent of what I was told. So I came home and I started doing research. I have worked in healthcare my entire adult working life, minus a few months. This has taught me a lot about reputable websites to do such research. I know, how can you ensure that I am providing accurate information? I am going to leave you some links so you can check out information for yourself. This blog is going to break it down more for you though. I came across words that only confused me. What did it all mean, where did I even fit in the list of terms? Spondylitis, Spondyloarthritis, Spondyloarthropy, Ankylosing, Undifferentiated, Non Radiographical. The list was overwhelming to say the least. I’m going to try and help out with that a bit.

As you already know, so many terms can be very difficult to fully understand. To think that diagnosis has improved over the years changing or adding to those terms, it doesn’t help clear things up at all. Then you have Doctors who are not familiar, and give it a name that either is outdated, no longer used or even incorrect. How are we supposed to learn anything about these terms when many Doctors don’t even understand them? We also have Doctors that are stuck on old research data, and stuck in old ways of treating, as well as diagnosis. Being in several social media support groups, I regularly see conversations come up regarding this very problem. People will literally argue about the facts. Then people who don’t know anything aside from what their Doctor told them pick up on inaccurate information, or explanations. This leads to countless people misunderstanding the actual terms and what they all mean.

Stay In The Know

There are so many words connected to the community of Spondylitis. First of all, there are umbrella terms which are used to describe a group of diseases with certain character traits. Then there are old classification categories and new classification categories. After that you have specific disease names. As well as the classification of auto immune verse auto inflammatory.  To just say this, it’s easy enough to see why there is confusion. Now I’m going to tell you that someone with Ankylosing Spondylitis can fit into more than one of these terms. So, how do we know what words to use when talking about our diagnosis, and what does it mean when our Doctors use certain words? Today I’m going to try and help clear that up. You can also check out my blog Ankylosing Spondylitis And The Sponyloarthitis Family.

It can be easy for us as patients to believe our Doctors know what they are talking about. In reality, a lot of Doctors still don’t understand Ankylosing Spondylitis. This can leave us without the best information. As you see your medical team, if they use an umbrella term rather than a specific diagnosis I urge you to speak with your team and get them to be more specific. Anyone that would like brochures on Ankylosing Spondylitis and such, please feel free to reach out to me or the Spondylitis Association of America. We can get you the brochures for free. You can take this information with you to the Doctor to help them better understand your health situation.

Understanding Terminology 

The umbrella terms used in the AS community are Spondylitis, Spondyloarthritis and Spondyloarthopathy. All three of these terms are referred to as umbrella terms because they overall cover each off the diseases in the the different classification groups. This means if a word
is used, the individual is referring to a group of diseases and not one specific disease such as AS. If    your Doctors tell you that you have Spondylitis, Spondyloarthritis or Spondyloarthopathy please dig deeper and have them be more specific. I also urge you not to use those terms as if they are enterchangable for the diagnosis of Ankylosing Spondylitis, this is not accurate. While yes any of those words could be used to describe AS, it would not be specific to AS. So in other words, you would be talking about AS, RA, PsA, ReA, or any other diseases within the umbrella category. The reason I discourage this is because we have enough trouble getting AS recognized in the community
as well as understood. If we use the umbrella terms, then we are not really teaching anyone about AS, we are also allowing the confusion that they are all the exact same thing, which isn’t accurate either.

Classification Of A Disease 

We have the Traditional and the Newer classification groups then we also have the Seronegative classification. That’s also a lot of terms to help confuse matters even more. All diseases that fit under the umbrella terms mentioned previously will fit into one or more of these classification groups. So, yes you could use an umbrella term, but then how would we or a patient know what that means unless they also know what classifications they fit into. The older  traditional classifications was broke down into 6 diseases. Ankylosing Spondylitis or AS, Enteropathic Arhtritis or EnAPsoriatic Arthritis or PsA, Reactive Arthritis or ReA, Undifferentiated Spondyloarthritis or USpA and finally Juvenile Spondyloarthritis or JSpA. Here we are again with several more terms. This however helps understand why it’s important not to have the habit of solely describing a disease with the previous mentioned umbrella terms, or by the Classification terms either. We as patients need our Doctors to help us understand fully where we fall on the scale.

With the newer classification group things got narrowed down a lot, but if you think that helps the confusion any, you are wrong. The newer preferred method to use only has two classification groups.
 All of the actual disease names we just discussed fall into one of the two groups. However, many
older Doctors either don’t know about the new classification, or just won’t use it. Leaving the confusion ever so great if they choose not to be specific. In our newer groups you either fit into Axiel Spondyloarthritis or AxSpA, or Peripheral Spondyloarthritis or pSpA. Axial Spondyloarthritis is defined by two of its own classification groups. You will either have Radiographic Spondyloarthritis, or Nonradiographic Spondyloarthritis. I just keep throwing more and more words at you. You might even have a classification of Seronegative Spondyloarthritis.

Axiel  And Peripheral Spondyloarthritis

If you have been told you have AxSpA you will either have Radiographic which includes Psoriatic, Reactive, Enteropathic or Undifferentiated or our great friend Ankylosing. Or you will have Non Radiographic.  This means that you show evidence on X-ray image. However, sometimes it’s seen on MRI or CT before it is on X-ray. So depending on your doctor and what images they prefer you could be bounced between the two if you change Doctors or see multiple Doctors.That doesn’t actually mean the diagnosis has changed. It just means one Doctor has seen changes on an image other than X-ray while the other only looked at X-ray and saw no evidence. It does take longer to appear on X-ray so this is possible. Most people with AS fall into the Radiographic classification, however some

With pSpA you are going to have more symptoms in the peripheral areas in other words you will have symptoms more often outside of the spine, in other joints. This group could easily be any of the diseases mentioned and in fact often times patients with one of the classifications often develope symptoms that put them into both classification categories. With peripheral there is no connection to imaging. It’s simply classified by having symptoms primarily not in the spine. Then we can even be given a diagnosis of Seronegative. What does this mean? It just means that you have no RA factor
present in the blood and have a stronger connection to HLA-B27 involvement.

Autoimmune Verses Autoinflammatory

Now we have the great debate on what is AS. Is it autoimmune or auto inflammatory? Well, nobody really has enough information to go on for this. It is preferred to be called Autoinflammatory. In our immune system we have the Adaptive and the Innate system. With the adaptive we develope antibodies to fight off viruses. In an autoimmune disease we have a malfunction and our adaptive system attacks the bodies healthy cells. Our innate system in a way does the same thing accept it’s not fighting a virus. It is fighting any foreign or harmful invader. The innate immune system triggers inflammation which in turn can lead to damage when the immune system has a faulty mutation. This means the innate system is triggered by our healthy cells and it attacks. Either can attack anything in the body.  Due to the lack of antibodies produced in an autoimmune issues, we are considered to have an Autoinflammatory issue instead. This just means those antibodies are not present but our immune system is still attacking healthy body cells and it is in turn causing an inflammatory response.

So How Do I Know What Ankylosing Spondylitis Is

Well, a good question, and surely you can see why this can be so confusing. My simple answer is that it should always be referred to as the disease name itself. Any of the diagnosis should be. If I have skin cancer I’m not going to just say I have cancer. I’m going to say I have Skin cancer, or maybe even just say I have Melanoma. Because if I just say cancer it could be anything from skin to lung. Nobody would know. So yes I advise only using the exact disease name.  However to answer your question I’m going to give you a rundown that will also explain why it’s so complicated.

If I’m diagnosed with Ankylosing Spondylitis, yes I have a Spondyloarthopathy or either of the other
 enterchangable umbrella terms because that isn’t the actual disease. If I just say that though, which one is it? Okay, we know I have AS, but am I going to tell people I have the newer classification or
the traditional classification? No, because that’s not actually a disease. Plus how would anyone even know what I meant, for all they know I could be saying I have diarrhea. If my Doctor prefers the traditional he is just going to say that I have Ankylosing Spondylitis. Pretty simple. However if he prefers the newer he may say I have  Unradiographic Spondylitis. So what would that mean, do I not have AS? It’s important to have the Doctor clarify, because you might not have AS, but you very well could have AS. How would you know what it is if you don’t ask? After all RA isn’t the exact same as AS. AS or Juvenile AS is the only thing discussed here that can lead to fusion of joints. While RA limits mobility it isn’t fusing, it’s crippling by deformities and destroyed tendons and ligaments. RA doesn’t form brittle bone like growth or turn tendons into a boney like state. Clearly neither are good.

So what if I changed Doctors and one said I have AS while the new one called it non Radiographic Spondyloarthopathy? It could mean a few things. Maybe the new Doctor is only depending on X-ray images while the old one may have used MRI or CT. Damage to the joints shows up sooner on MRI and CT than it does X-ray. So you definitely need to ask more questions. Yes you can have AS and not have evidence on X-ray. Now that we know this, what if they said I have Peripheral Spondylitis? Well, that can still be AS. You would just be having symptoms that are primarily not in the spine. Same thing if they say it’s Seronegative. It can still be AS. So you can have AS and clearly the umbrella terms cover that. You can also fit under any of the classification terms. You could also have more than one diagnosis that happen to fall into different classifications. That’s why it is important to use the actual disease name rather than any of the potential identifiers.

I hope this helps clear things up and shows the importance of using the actual disease name when discussing your diagnosis with others and with Doctors. I encourage you all to try and get your Doctors on board with this as well. I promise if a Doctor says this information isn’t correct, please reach out and request information to provide them. You may also look up information at links similar to what I use. Keep in mind even some websites use terms as if they are enterchangable for the
disease name, but they never should be used that way.

As always Kick Some AS

Thursday, January 24, 2019

I Am A Warrior

Just When I Thought My Hiking Days Were Done..

I was an avid hiker, I have stood atop some of the most breathtaking mountains. I have felt the cold crisp wind steal my breath away. I know the pain of thinking the mountain has kicked your butt, bruised and banged up, yet you don't quit. I have shed blood, sweat and tears along those challenging dirt paths. It was my passion, I lived for the moments that I spent in the woods. Suddenly life changed, and my world was one I didn't know.

I knew in my heart the reason I challenged myself so much was because I needed the strength for a much harder battle. My life has been full of experience, from motherhood, living in an abusive relationship, having a challenging yet rewarding job, and caring for my children's dying father. It was all part of a greater plan, and I know I had to be tested in order to gain the knowledge that I could and would survive.

This Is My Greatest Fight...

Once I received the diagnosis of Ankylosing Spondylitis I thought it meant I'd finally feel better, treatment, medication it was going to give me my life back. It did temporarily. Now, I'm not sure and don't know if I'll ever know if AS, extended time until diagnosis, medication, or something else all together is the cause. I made a choice, it won't change anything knowing. No matter what I'm still going to fight, advocate, raise awareness, and do all I can to make a change for the community.

That is and always will be my fight. It's definitely a big one and requires massive amounts of strength. Over the course of the three years since my diagnosis I have gone from an avid hiker in the physical world to one who climbs those mountains mentally now. I was asked to stop hiking due to symptoms I started having. Until today I had never even related the activity to my life now.

It Is My Blessing And My Curse..

Being sick has given me multiple opportunities to help others in the AS community. For this, I do consider it my blessing. This has also become a passion for me, I love what I'm doing. I love helping people. It's what I have always done. The pleasure I get from helping others also keeps my strength up and my drive to do everything I can moving forward. Because of this I am not just helping others, I'm helping myself too.

I have been steadily getting sicker and sicker though. No diet or exercise seems to help. Medication isn't the answer, but being off medication is even worse. Test after test, appointment after appointment just trying to find the answers. Just four days ago I was told by my pulmonologist that I'm in the beginning stages of lung disease. Of course this means more test, regular monitoring and plenty more appointments. Then I get a phone call, ultrasound revealed that there are signs of liver disease too.

I Am A Warrior...

I get up everyday, I participate in life the best I can. I get to spend my days around my children. Doing things I truly love. I get to soak in the beauty of everyday. I'm not beaten down, nor am I broken. Don't take it wrong, I definitely breakdown too. I have a good cry, and sometimes I get angry or jealous. I don't have the energy to argue, so I don't scream and shout. I also understand the precious things in life. I'm not perfect by any means, but I definitely know how to learn from my mistakes.

My intention is to fight as hard as I always have. Quiting and giving up are not words in my vocabulary. No matter how hard the journey gets, I know I have conquered mountains before. The ultimate prize at the end is always breathtaking beauty. I know that if I fight maybe the beauty is seeing a different future for others with AS. If I fight maybe we find a cure. If I fight maybe I win!

As always, Kick Some AS