I have lived with the symptoms of Sjögren’s Syndrome since I was a child. It took a lot of time and effort to get diagnosed. Doctors did not find it without me directing them. Men and children are not typically considered candidates for Sjogren's Syndrome.
Why is there such a struggle to be diagnosed with a relatively common autoimmune disorder? Sjogren's Syndrome is unfortunately not well known in the medical community.
In the USA alone, it is estimated that it affects four million people. This means that one in less than 100 people is the expected occurrence of the disease.
Of these people who have Sjogren's Syndrome, ninety percent will be women and 10% will be men. This has been the expectations set for years. The group of people most recognized are women in their fifties or older. That has also typically been the focus, but is it accurate?
Over the last several years, it has become apparent that people of all ages can present with Sjogren's Syndrome: men, women, and children. People of both sexes, and of different ages. It was also quipped by a speaker last year at the Sjogren's Syndrome Foundation (2018) that his dog was also now diagnosed with Sjogren's Syndrome and has required treatment.
There have always been men diagnosed with Sjogren's Syndrome, but it is a real challenge for men to be diagnosed. One of the reasons that men have struggled with diagnosis has been that the primary tests that are done are antibody tests (SSA and SSB). It is an agreed upon fact that thirty percent of people with Sjogren's Syndrome will never present with these antibodies. The other test done to check for Sjogren's Syndrome is typically a lip biopsy; Many doctors will not proceed to a lip biopsy, typically because it crosses specialties. The diagnostic criteria also keeps changing for a diagnosis of Sjogren's Syndrome.
At the Canadian conference (2018), a research immunologist (US based) presented findings of how he detected Sjogren's Syndrome earlier in both men and women. He also presented an interesting fact: Men rarely present with SSA antibody. This is a concern because many rheumatologists will stop testing after checking for SSA and SSB antibodies.
The diagnosis (for Primary Sjogren's Syndrome) no longer tests for both SSA, and SSB. Diagnosis is based solely on the SSA antibody, or a positive lip biopsy, for a diagnosis of Primary Sjogren's Syndrome. Other criteria must be met, but these are the main criteria for diagnosis.
Primary Sjogren's Syndrome is a diagnosis of Sjogren's Syndrome alone without another autoimmune connective tissue disorder present . Secondary Sjogren's means having Sjogren's Syndrome with a secondary autoimmune connective disorder (like Lupus, or Rheumatoid Arthritis). This is for research purposes only and does not mean that a person has a different disease or a worse disease: they have Sjogren's Syndrome. This is done for research purposes and for confirming the results of medical trials and research on Sjogren's Syndrome specific research.
In general, most doctors are not familiar with Sjogren's Syndrome. This has improved, but most of the doctors, aware of the disease, are expecting women over fifty years of age that are presenting with dry eyes, and dry mouth. They are not typically thinking of men. Men are considered the rarity.
The research immunologist observed Sjogren's equally in males and females in the testing that he was doing. He was looking for it using a different criteria, than just the SSA and a lip biopsy. He was able to detect it earlier, and predict accurately how it would develop and how to prevent it if caught at early enough stages.
The existing criteria for diagnosis does not recognize Sjogren's until damage has occurred. The "SJO" test which is now being utilized (in some cases) to screen for early Sjogren's Syndrome has some of the extra tests included. These tests check for many other markers outside of the usual tests which can include ANA, SSA, SSB, and RF.
At this point, it may be questionable to test men for the SSA antibody alone, when they are going to be negative in most cases.
There are many men who live with Sjogren's Syndrome who will never be diagnosed properly, and will live with a collection of many different issues and no centralized management or treatment. This is also a very real scenario for many women, but the doctors are more likely to investigate women then men.
The point of this article is to draw attention to the different groups who are affected by Sjogren's Syndrome, but less likely to be recognized and tested properly. Better recognition of the disease is in the best interests of men, women and children. Men are now starting to be focused on by Sjogren's organizations. This is key to getting more information into the right hands: knowing who their patients are.
If you have found this article helpful, please feel free to share with friends and groups.
I am not a medical professional. I am sharing this information as is.
My name is Randy Klein. I am a man living with Sjogren's Syndrome.
Sjogren's Syndrome can affect a person of either gender, and can affect a person of any age.
If you are here looking for answers on Sjogren's Syndrome, than I will do my best to pass on the information and ideas that I have been able to assemble.
Sjogren’s Syndrome is a collection of multiple symptoms across the body. It is a systemic disease. The articles supplied are not just specific to Sjogren’s Syndrome, and the issues may affect different groups of people.
As we learn more information about autoimmune conditions, the information presented may change or go "stale" over time. I will do my best to keep this as current as possible.
There are many theories on the cause, treatment, and cures. At this time, there is no definitive single cause of Sjogren's Syndrome, and there is no cure. There are treatments, but they do not work the same for each person affected, or at all for others.
I have chosen a format of writing that is easy to follow, that is short, and keeps things simple. The goal is to make this a good starting point for people to start asking questions or to get a better idea of what they are living with and how to get help.
Please feel free to like the posts and follow the facebook page. Please feel free to share these posts in groups or with friends. Please keep in the original format: this helps others to find the other articles found on this page.
We are all affected differently, but have many things in common. Let's help each other.
This is not a forum for spamming: any posts of this nature will be removed. This is not a page for you to promote your website or your group or yourself. This is not a page to promote hate, politics, or dissent. Any posts that I believe are insulting or offensive will be removed. Anything posted that is irrelevant to the posts and exist to draw attention away from the subject will be removed at my discretion. I will always give benefit of the doubt when I can.
If you need help translating articles, I have found Bing Translator to be a very good tool. If you are using it, cut and paste the text from the articles into it. Facebook also provides a translate button. The Facebook translate button works, but I find the Bing translator works better.
Please see https://www.bing.com/translator for the translation tool.
Please feel free to check out our other articles at @dudewithsjogrens
When I got my diagnosis for Mast Cell Activation Syndrome (MCAS), I felt more of a sense of relief than one of dread. I wasn't as worried about my future because I knew that there was potential for relief.
I was diagnosed at fourty-seven years of age. I had lived with the symptoms of MCAS for my whole life. The problem was that it was an unknown disorder up until recently.
On diagnosis, my immunologist started me on a medication called Ketotifen. Ketotifen is an amazing drug for me. It controlled some of the predictable symptoms, as well as getting my unexplained Cataplexy under control.
I still had some issues and also ended up using Reactine, Ranitidine, and Cromalyn as well as Ketotifen. These drugs greatly reduced my symptoms and I was able to do more things than I could do comfortably before.
Things were not perfect, but things were better. I continued to struggle with strong smells like colognes, mould, cleaners and air fresheners.
I had to control my diet. I also must be careful to avoid fermented foods, and many histamine foods.
I have not had a major anaphylactic response in close to two years. I still have times where my tongue and throat can swell but it is not the life-threatening situation that it could be before.
Things had gotten better, and I reached a point where things started to go bad again. What had changed?
The medications really made it easier for me to do the things that I hadn't been able to do. It reduced the symptoms, but most of them were still there. Slowly, I tried to add back in as many things to my life as I did before.
Now, it has started to overwhelm me again. It's easy enough to blame the medications for not working, but they are still working. I'm not cured, I just had a period of time where I was able to push my limits until I pushed them too far.
What does this mean? It means that I have to find a way to restrict the things that affect me badly. I have to give some things up, and some things up again.
In the last few years, there has been a large increase in people using air fresheners and strong chemicals in industrial bathrooms. Laundry detergents have become more concentrated, and it seems that I am running out of safe places to go where I can breathe normally and not react violently.
I could move away from the big city, and stay away from people in general, or I can try other medications until I find the right balance. I often wear a mask more in public now.
I still have other health conditions to contend with.
I've run a company for twenty-five years that relies on me interacting with the public and my customers. This could be a game changer for me, but I can also hire more people to interact with my customers on my behalf and I can grow my company instead.
One thing that I have learned in the last twenty-five years of business is that success often follows difficult circumstances. I am in the process of adjusting the things around me to keep things running in my present state. This strategy been successful for me in the past, so I will make it work for me again for as long as I still can.
Mast Cell Activation Syndrome; it got better for me and than it got worse. I've heard similar things from many people who live with it. I don't know if it is worse, but it feels that way after being able to live normally. My Cataplexy is still fully under control during this time.
Each person who lives with MCAS will have a different experience but will have several things in common.
There is hope in all of this. I have not given up. I don't think any of us should. Sometimes we end up following a different path to get us where we were meant to be.
I hope that this has helped you as well. If you feel that this has helped you, please feel free to share this with friends or in groups.
Many people talk about their bucket lists. Many don't do these things until they realize that their time is short.
This can be a foreign concept to many people: they've never thought about what they want to accomplish in life.
What is a bucket list? It is a list people create of the things that they want to do before they pass away.
For some people, the list is quite extravagant, and may lead to behaviour they would not normally indulge in: both good and bad behaviours. The timeline is often escalated.
This article is not just about swimming in the ocean, sky diving, or sailing the world. I think that it is more about what a person can do now, especially if they are facing many years of the gradual loss of their physical abilities.
How can I live my life like I am living my bucket list all of the time?
I can start by taking more calculated risks. Risks are not always a bad thing. We each take risks daily. Maybe I’ll help someone out I don’t know. Maybe I will learn to play an instrument, or start writing. Maybe I will find a new job, or try something else. Maybe I will build something that lasts.
I will take the time to look at my life and see what is working for me and what isn’t. I will decide what is important to me, and what isn’t. This will direct my level of risk taking. Risk is change. I will change things for the better, and try things that I haven’t made time for that are important to me.
There are things that I will not compromise. I am a husband and a father. These things are important to me.
The possession of things is not the driving factor for me. I had lived very poorly and also very successfully, and the pursuit of things is not as alluring to me as building and creating things.
The bucket list is not just about fulfilling self, as it is above doing the things that matter to you, and sometimes about leaving a legacy.
I was NOT given six months to live, but instead I became aware of my mortality, and the loss of my health and physical abilities. I needed to do things while I was still able to.
This means that I have an escalated time frame to get things done. The clock is ticking.
The struggle with a long term illness that slowly robs me of the future is only as limiting as I let it be. I've done more than I've ever expected, but I'm not done: the bucket list has become a lifestyle. There is so much more that I still want to do, and things still to be discovered. Even with limitations, I am succeeding.
I've learned to not try to do everything at once. I do things better when I focus on one dream at a time.
It doesn't take a critical illness to change things. It just takes a realization that time is not infinite.
Be well, and do well.
If this article has helped you, feel free to share with friends and family and in groups.
Every disease starts as an unknown until it is recognised by symptoms, is researched, named, and hopefully both recognised and treated.
Some of these diseases are treated with contempt, or scorn, or not treated at all by the medical community.
Years later (hopefully), these diseases and disorders are better understood, and are treated.
Leading up to these times, a person can go many years without any real treatment. They hopefully will come across a doctor who is willing to try different things until something works.
The medications used for a disease without a name, or a poorly understood disease is typically referred to as an "off-label" medication. This is a medication being used in a different way that it was designed.
There are a lot of people who have lived through many types of horrific pain, or problems that can affect the gut, immune system, or worse, many will live with invisible diseases: They look "Normal."
It's not easy for the person who is dismissed, whether it is because they are not believed, or it is attributed to mental illness.
The latest twist to the stigma of living with a health disease is by having it made political: it's existence denied, and it's presence used to create scapegoats. This has been a more recent phenomena, but it leaves people without hope, allies, and treatment.
People are left to fend for themselves, often feeling isolated, and ashamed that they are unable to get help or even to mention the name of the disorder that they live with.
Disorders commonly accepted today such as Attention Deficit Disorder, Celiac Disease, forms of Autism, Fibromyalgia, autoimmune disorders, food allergies, personality disorders, Irritable Bowel Disorder, STDs, mental illness and the list goes on. It wasn't always this way.
Infectious diseases for many years have been a big part of this. Living with a deadly infection that seems to be someone else's problem until it has spread into our own communities.
What are successful strategies for dealing with a poorly understood, scorned or a disorder that is of developing understanding?
- Recognising that these things take time to be understood and accepted.
- Finding acceptance and hopefully a community of people living with similar issues to communicate with.
- Finding doctors who are working on the cutting edge of medicine, or are sympathetic and willing to help.
- Developing a voice as a person or group and then learning how to advocate for help, resources, and treatments.
- Working to influence people who will hopefully end up becoming allies, and advocates
- Finding people who are well-known who are living with the disorder or have a family member or friend who are passionate about a cause and willing to educate.
- Securing resources to keep this fight alive until there is both recognition and a successful line of treatment.
- Finding a way to educate effectively through different forms of media to allow more people to understand.
The above strategies that time to develop, so short term strategies and goals are critical as well:
- Find ways to keep busy and motivated. Hobbies, research, and things that can involve other people.
- Get up every morning and try to keep a healthy routine: Personal hygiene, eating regular meals where possible
- Find something to focus on. Short term and longer term goals
- Keeping up lines of communication with people.
- Try different treatments until something works
- Finding out from others what they have done to succeed.
- Help others with the same issues to better understand the things that will help us to motivate others to do the same.
- Each person's circumstances can be different. Make this part of the perspective that you develop, and this helps to build teamwork.
- It can be devastating to put all of one's hope into a treatment or cure, only to find out that it too, has not worked. Be cautiously optimistic about things.
- Critical thinking is key. Does something work, and why does it work, will it work again, how can I make it work again?
Having been through several of these circumstances, there had to be a constant fight against having a stigma become part of my identity. It's important to challenge unfair stigmas.
Dealing with a diagnosis that stirs controversy is an injustice, but one that can be overcome. It's important to be surrounded by supportive people (regardless of who they are), and to find a path to advocacy through your efforts or by others on your behalf.
Don't give up.
If you found this article helpful, please feel free to share with family and friends. I am not a medical professional: all information shared is on an "As is" basis.
For many of us, it is a daily struggle to get things done because of a lack of organizational skills, or constantly shifting tasks or workloads.
There is hope.
Struggling to be organized, and to set and manage priorities, also affects people with good organizational skills at times.
There are a lot of people struggling with unemployment or have too much spare time, and no idea of where to start and how to get organized. This can help these people to get organized as well.
The ability to plan and prioritize things changes everything. I write down what I need to do, and when it needs to get done. I determine the things that are most important things to be done, and what can be done at other times.
Can priorities change? Yes.
In previous articles, we talked about a ceiling, or the maximum amount that one person can do. It can be different for each person depending on motivation, skill, determination, physical ability, resources and systems. How much can one person do in a day?
Systems refer to routines that people follow to be more effective (or predictable) in how they are doing things. It has a lot to do with time management, and being aware of how tasks are accomplished. It's very much about replicating success.
Struggling to become more efficient can, at times, lead to taking on too much work. This can lead to burnout, due to taking on too much work and having a breakdown. Everybody has a breaking point. We want to avoid going there.
So, how can we avoid burning out? This is accomplished by setting priorities: what needs to be done, and when. We create a list of what are the most important things in a list, while being aware that priorities can change. We need to be aware of the steps that may make up each task, and to keep track of what has been done.
Start with a shorter list and add priorities. Remember that successful priority lists will stretch over several days and weeks. That way it doesn't get thrown out at the end of the day or forgotten if you don't accomplish everything on it. I do mine on the computer and on my smartphone so that I can easily modify it.
We need to take into account if two priorities be worked on at the same time effectively.
Setting priorities has to be realistic in regards to how many things that can be done in one day or a week or a month.
Abilities fluctuate, but it's a long distance race, not a short sprint.
Please frequently go back and check your list? It's important to be aware of the things that are motivating you to do things. Priorities may have changed or may no longer be important.
It's important to honestly ask ourselves whether goals are being achieved. It's important to not be distracted or to be taken off course.
It's important to determine if help is required, and who these resources might be: friends, co-workers, fellow students, teachers, mentors, fellow businesses, people from our communities. It's important to learn to ask for help, and to determine what the costs are and what risks that might be involved with doing so.
At end of each achievement or priority, it's important to check if the priorities were met and if goals were met. Could things have been done better, and what could that look like?
It's important to learn from our successes and failures. It helps to document, create templates for the future, and to determine if there is a better way to do things.
- What was the effect on myself and the people around me?
- Can I allow my self to make mistakes and learn from them for the future?
- What things can I do differently next time?
- What can I do to make myself more effective or productive the next time?
- What really needs to get done today?
I hope that this article has helped you. Feel free to share this with friends and in groups. I am not a medical professional. All information is provided on an "As is" basis.