Sjogren’s: Nuisance or Big Deal?

I have been thinking a lot about whether to write about Sjogren’s this month, wondering if perhaps the people who know me already knew enough about Sjogren’s. If people were wanting to know more they could just Google and get plenty of information that way, especially if searching for the Sjogren’s Syndrome Foundation or Sjogren’s Canada. Another reason for my uncertainty was because I didn’t want my blog to become focused solely on Sjogren’s.

I suspect some readers may be thinking I write about my own experiences with illness to garner attention or sympathy. Many people, including some health professionals, believe Sjogren’s is just “not that big of a deal”. Often people tell me I could have a disease much worse than Sjogren’s. That is true. Are there worse diseases to have? Of course; ALS comes to mind first off, but there are many others. I currently have people I love being treated for metastasized cancer; others hospitalized with other autoimmune illnesses fighting courageous battles to regain some semblance of health. I understand the reality of more severe illness, but I also want people to be aware that Sjogren’s is not a simple, relatively benign disease, just a nuisance.

Several years ago a study was done comparing quality of life for patients of various chronic and / or progressive diseases – Sjogren’s was on par with Multiple Sclerosis for impact on day to day life. Using eye drops is a mere inconvenience compared to many other aspects of the disease. Sjogren’s can progress to affect organs such as the liver and the lungs. Many of the treatments for Sjogren’s and related complications are chemotherapy and biologic drugs, “heavy hitters”, also used for cancer treatment or to prevent rejection after organ transplants. (It should be noted that there currently exists no specific treatment protocol for Sjogren’s as there is for MS or RA.)

Yesterday after blogging about one specific and minute part of my Sjogren’s journey, my eye care ritual, I realize I do need to continue to write about Sjogren’s. Not just the facts and “bones” of what it is as can be found on many medical websites, but the human experience of my journey. I can tell you from my brief time in a Sjogren’s on-line support group, though sharing the same disease and many of the same symptoms, every patient has a unique combination of symptoms and treatment.

Thank you to those who read yesterday’s blog post and made comments, or asked questions on my Facebook page, you have shown me there is still more for me to tell about Sjogren’s. If you look in one of a very few books about Sjogren’s, or on-line, you can quickly discover what tests they can do when looking at your eyes, and some possible treatments. From the responses I received yesterday, I realized yes, a book can tell you Sjogren’s patients use eye-drops daily, but that doesn’t really tell you what that actually means day-to-day. Over the next month I hope to help you understand what it is like for me to live with this chronic, incurable, progressive disease.

Click on text below to view brief video:
Excellent 3 minute TV News Interview with a Patient + Dr.

I wish it was just an April Fool’s joke….

Waking this morning, my first thought before even opening my eyes was: what day is it today? Which was quickly followed by Saturday – April 1st – April Fool’s Day – also the first day of Sjogren’s Awareness Month.

I was then awake enough to roll over and open my eyes. But before opening my eyes each morning, I first must, ever so gently, rub each of my closed eyelids with a finger. Massaging lightly over the entire surface of my closed eyelid allows it to delicately detach any part of the lid that might be stuck to my cornea due to night time dryness. To most, this would seem a ridiculous and unnecessary activity prior to getting out of bed, however it is crucial for me. After numerous painful rips and damage to my cornea due to dry eyes caused by Sjogren’s Syndrome, I finally remember never to just pop my eyes open upon waking.

Immediately after getting my eyelids open, I reach over for the eye drops on the night table plopping a couple drops into each eye. I do this with a great deal of care as well, not because it is an intricate procedure but because eye drops are so damn expensive they might as well be liquid gold so I dare not waste a single drop with poor aim.

After putting the drops in, my vision appears as though clouded due to light fog permeating the house. There is no fog, and my vision is fine, but the drops I use first thing in morning are to replace the lipid layer in my eye which several years ago the optometrist told me was nearly non-existent. The drops look like milk, and contain lipids which most simplistically are fats, vitamins, and other things that help preserve eye surface health. While I wait for the foggy white vision to dissipate, I sip on a bit of water to quench my dry mouth, and do gentle restorative yoga while still cozy in bed.

Throughout the day I replenish and refresh my eyes a multitude of times with another type of drop which is even more expensive but is lighter and within a few blinks does not cloud my vision. Before going to bed at night I coat my eyes with an ointment prescribed by a specialist which I need to prevent cornea rips during sleep. After the ointment is in and has coated my eye surface, I add a couple drops in each eye of yet another type of eye drop this one a thick gel. I have become fastidious regarding my night rituals, since as you can imagine once my eyes are “gooped up” for the night, all other activities requiring vision must cease.

So why, you may ask, am I telling you about what I do to my eyes? Well, my realization it was both April Fool’s Day and the start of Sjogren’s Awareness Month, also had me wondering what if Sjogren’s was all just a big joke (albeit a perverse, nasty mean one)? How wonderful to wake one morning, maybe even today, to discover it had all been a bad, bad dream. I knew that to be sheer fanciful thinking; I didn’t take the chance to pop my eyelids wide open, risking a tear. It did give me pause for thought though – how would my life be different if I didn’t have Sjogren’s? I can only imagine, but for this month instead of thinking of “what might have been”, I will share with you my “what is”.

P.S. Obviously this website is hosted/shows time on the other side of the world from me, as I see the date as already tomorrow. Time flies fast enough, I don’t like them showing me today is already over when it is’t where I live, and isn’t that all that counts? 🙂

Pumping the brakes on perfectionism…

“The greatest mistake we make is living in constant fear that we will make one.” ~ John C. Maxwell ~

A little more on perfectionism today because it is why I avoided writing the last week or so. The avoidance began after being involved in a discussion about published books and famous authors.

The discussion started after a friend discovered a mistake in pronoun use in a New York Times best-selling novel. I mentioned I was surprised such a mistake had made it past the editors at a large reputable publishing house. All were in agreement.

The talk then turned to mistakes writers make. Another friend mentioned she is appalled when writers use “comma splices”. Everyone involved in the discussion then began to detail errors they have seen in published books. I stood silent.

As the group broke up for the evening, all I could think was: I do not know what a “comma splice” is, oh my God, and I think I’m a writer? I’m not a writer, or I would know what that is.

I drove home pondering if I should continue to write or give it up completely. To be honest, I was ready in that moment to swear off writing forever. (I had done so once before, after a grade 12 English class with a teacher who terrified me. That swearing off of writing lasted twenty years or more.)

This was also not the first time in more recent history I was having anxiety over my writing. I have Facebook “friends” who are published poets, authors, high school and college level English instructors, spoken word artists, lyricists, Ph. D university professors and creative writing instructors, journalists, and English literature majors. The thought has crossed my mind many times that my writing is not up to their standards, and absolutely I admit it is not.

(Even writing the previous sentence I am thinking: I used the word “that” again. Oh no. I am just proving my own point. Of course I am not a “real writer”.)

The next day a friend who is in my writing group phoned me.  I confessed the anxiety I was having because of what occurred the night before. She started laughing and assured me I probably DID know what a comma splice was, I just did not know it by that term. Thanks my friend, I needed to hear your encouraging words.

I took a deep breath; I realized as a reader it is not perfect grammar, punctuation, classic structure, or extensive vocabulary which catches my attention, rather it is authenticity. Granted there are certain standards to be upheld in writing, as in all communication, but I can be forgiving of writers who make some errors if what they have to tell me is authentic. If a piece of writing resonates with me I don’t care if it’s in the form of a cartoon with word bubbles and thought clouds, or a poem with no structure or rhyme.

If I can be forgiving of other writers making mistakes, so must I be forgiving of myself. Part of why I named this blog as I did is because I do want to be wanton, both playful and a bit reckless in my writing. Maybe all along I wanted to send a subliminal message to those seeking perfection in writing – this would not be the place to find it.

 

P.S. “A comma splice is the use of a comma to join two independent clauses. For example: It is nearly half past five, we cannot reach town before dark. Although acceptable in some languages and compulsory in others (e.g. Bulgarian or French), comma splices are usually considered style errors in English.”

the two “P” words….

Can you think of two words that start with “p” and fit together perfectly?

And no, all you innately sexual creatures, once again, I am not thinking of “that”. Remember, I told you before, this is not the place for sexually wanton writing, yet somehow ever since I said that, innuendo continues to appear.

The two seldom verbalized or admitted, but often practiced words, are the reason I have been away from my blog the last seventeen days. Of course I’m referring to procrastination and perfectionism. Usually when I am away from my blog for awhile it is because of one or the other, or both.

Recently I wrote a 2500 word short story for a timed international writing contest, NYC Midnight. One of my Underground Writing Cohort friends had tempted me to give it a whirl. I had a week to complete and submit the story after being assigned a genre, character, and a specific subject to be included.

Thanks to doing the story for the contest I became more self-aware. I discovered I can procrastinate perfectly. I never considered myself a perfectionist before. I now realized I was obviously wrong.

To be fair, the first three days I did have a migraine headache. Apparently people who have Sjogren’s are also prone to migraines at a more frequent rate than other migraine sufferers; hooray for us. Mine start by feeling like a vague sinus headache then build up to full frontal facial pain for three days. Needless to say pain encompassing my entire face is not conducive to my creative pursuits. So, right off the get go I was down to four days.

While I wasn’t sitting at my computer typing out my story I WAS doing what I do best – writing the story in my head. I told Mr. Wanton it would be extremely helpful to me if he, of technological expertise and mechanical invention, could possibly come up with something that could transcribe my thoughts automatically into a word document on my computer. You know, like verbal word transcription, but for my thoughts. He said “that is a bad, bad, idea.” What does he know? Oh yah, I usually tell him what I am thinking. Perhaps his opinion is of value in this instance.

Upon the end of the headache I should have been ready to type up my story, right? Wrong. For the next few days I proceeded to attack my long lost to-do list with a vengeance – the one that sits permanently on my desk, with items dating back to 1999, not all of which are crossed off yet.

Wow – more self-awareness – if I wanted to finally accomplish my least appealing tasks, the long overdue “leftovers” on my to-do list, all I had to do is commit myself to something I wanted to do even less, in this case the short story.

Perfect. I could put off the short story writing, not feeling guilty whatsoever, because I was getting lots of other stuff done. You know, important stuff – like organize my panties and socks, look up random symptoms via Google, watch Adele and Bruno Mars “Careoke” videos on YouTube repeatedly (okay, admittedly that wasn’t on my to-do list but in hindsight it should have been). I accidentally discovered the most seriously underrated motivational technique for overcoming procrastination ever.

So that brings me to this moment. How did I get over my procrastination to write a blog post today? Easy answer, the alternative was the now top priority item on my to-do list – personal income tax. Uh-huh, I definitely found what I can do perfectly every time.

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P.S. In case you are curious, I did complete the short story in eight hours on the seventh day, well before the midnight deadline.

Heartfelt but not Hallmark…

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Valentine’s Day always has me awash in mixed emotions. I suspect I am far from the only one who feels a pull between celebrating, ignoring, or simply acknowledging February 14th.

The cynics say it is just another “Hallmark holiday” – a day that is commercialized to increase sales of certain items such as cards, chocolates, lingerie, champagne, wine, diamonds, and dinners out. Of course, that is true. But, I dare say, the day should not just be for couples who are lovers, sweethearts, or life partners with fat wallets. It can be a day for anyone to remind someone how much they are loved.

If one strictly looks at the day in a romantic sense or in the commercialized way of what one is “supposed” to do, it is easy to become cynical. Viewing it by that definition opens one up to guilt, expectation and even comparison, all feelings we best avoid as no good will come of them.

Mr. Wanton and I used to celebrate Valentine’s Day every year, until his Dad died on that date about twenty-five years ago. The year after the death, I no longer received flowers, we did not go out on a date, and my funny but loving card went unreciprocated.

I was devastated, but pretended it didn’t matter. I made a delicious dinner for us at home, reminding myself what mattered most is that we loved each other and we were together. We never talked about his Dad’s passing then; we still don’t today.

Over the years following his Dad’s death I waited with anticipation for when we would return to our previous traditions of celebration, but it has never happened. Initially, I was hurt because I felt as though I was being punished for something I did not do.

My husband blames our lack of celebration and festivities on February 14th to having three sons born approximately nine months after Valentine’s Day. Mr. Wanton thinks it is hilarious to tell people he used to buy me champagne and roses every Valentine’s but after having three kids as a result of it, he had to put a stop to it.

I don’t laugh when he tells the story. I wish he could speak the real reason, but he can’t. Initially I went out of my way to attempt making February 14th a happy day, choosing just the right card for him, making a special dinner at home with some of his favourites, but then I stopped. Today will be a regular day for Mr. Wanton and I. That’s okay.

So what is the point of this tale of woe, with a seemingly “poor me” theme?

Well, this morning as I woke up and thought about what day it was, I thought about everyone who may not be having the fairy-tale Happy Valentine’s Day “as advertised”. I know there are people at this very moment who are feeling forgotten, unloved, and unworthy. You may be one of them.

I want you to know you are not alone, and you alone are “enough”. I want you to keep your heart soft, even if it hurts. Please don’t let it become hardened. If you don’t have someone to love today, do something you love. I want you to remember even on days you may not receive love, it is still yours to give. Give generously.

xoxoxox

I came out of the closet at book club. #BellLetsTalk

I belong to the book club at the public library, a welcoming and eclectic group of women aged from twenty-something to seventy plus. The group consists of stay at home moms, retired teachers, a retired therapist, a hairdresser, small business owners, office administrators, a power engineer, a librarian, school counsellor, and a candlestick maker. Ok, not really, no candlestick maker, but people from all walks of life. We welcome men to our group, however only one has ever shown up, mostly he ate cake and then fell soundly asleep (thankfully he did not snore). To show you how polite we all are, not a single person snapped a photo while he dozed under the brim of his cowboy hat.

Being open to members of the public, most of the people are strangers to each other upon joining the group, save for the few who came together in the safety of a pair. Books are selected by the members in rotation throughout the year. As you can imagine the selections are as diverse as the members. Over the last couple of years we have at times made comment that we hadn’t ever read humorous books. I made it my mission to find one as my selection to kick off our new season in September. I chose Jenny Lawson’s memoir: “Let’s Pretend This Never Happened”. All I knew about it prior to selecting it was that it was supposed to be hilarious (I love funny) and her Dad had been a taxidermist (I love animals both alive and dead, but mostly alive). I did not know she suffered from a mental illness.

It would have been nice if someone had tipped me off to the number of f-bombs Lawson drops, since we have some “church going women”, well-mannered ladies who I was sure would not be amused by the profanity. But as I said, we meet at a public library, so in keeping with my own no-censorship and “freedom to read” ideals I didn’t skip out on the gathering to discuss the book even though I knew there would be people who would not appreciate my selection. I was not too concerned, as only once in our many year history was there a difference of opinion so profound I thought perhaps two people might succumb to fistacuffs. (Yes, that’s real word – consult the urban dictionary.) The book being discussed was “Eat, Pray, Love”. While two ladies went at it over whether Ms. Gilbert was selfish or not, the rest of us ate, prayed no bloodshed when ensue and loved the short-lived bit of drama unfolding before our very eyes that had never occurred before (or since).

The night of my selection I was nervous about how people would respond to the book (and tragically I admit, of course what they’d think of me being the one who had chosen it), but with the exception of two people out of about fourteen they thought it was funny, claiming to enjoy it. I suspect those who hated it the most, or were repulsed by the language decided to stay home watching re-runs or reading Jodi Picoult. (Story for another day: “How I trashed Jodi Picoult at book club in 2013”. Something I realize I should never do until I write and sell as many millions of books as she has.)

Anyway, as the discussion went round and around the circle I found myself bristling inside. It seemed, and maybe it was just my perception, that some people did not understand the reality of living with anxiety and the obsessions and compulsions that can happen as a result. They didn’t get that sometimes a person has to laugh at themselves and their eccentricities so they don’t cry. How Ms. Lawson described anxiety was accurate.

Suddenly I found myself blurting out “I have anxiety – medical anxiety – and this book made me feel better – it made me feel kind of normal.” I think I saw recognition and empathy in a woman’s eyes. I pretended not to notice. I was conscious of not drawing attention to her. I wanted her to say: “You know what? I do too”. I wanted anyone to say “me too”. No one did. I understand. I had not intended to tell anyone that night I suffer from anxiety. I think Jenny Lawson’s honesty, courage, and humour inspired me to finally come out of the closet when I least expected to. But you know what? I am glad I did; it felt good to let the secret out.

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I decided to write this story in honor of #BellLetsTalk day January 25th, the day when Bell donates five cents to mental health initiatives every time the hashtag #BellLetsTalk is used on social media. Over the years the campaign has generated nearly 80 million dollars while encouraging those with mental health challenges to come forward to tell their stories, and to educate those who don’t have such struggles so they may understand and be supportive to those who do.

For more information on Bell Let’s Talk go to: http://letstalk.bell.ca/en/bell-lets-talk-day

Visit Jenny Lawson’s blog at: http://www.thebloggess.com

An older post I wrote just about the book club I belong to:https://wantonwordflirt.com/2013/11/19/book-club-tonight-2/

Queen of Cliche’s Friday the 13th

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I have a confession to make – Mr. Wanton affectionately calls me the “Queen of Clichés”. Being a blogger, a writer, a sometimes poet, this is not a title I should be proud of in any way.

He crowned me the Queen after decades of daily use of such phrases as: I look like the wreck of the Hesperus and don’t put all your eggs in one basket. Admittedly, I do overuse clichés. I know it, I own it. When I write for public consumption I consciously attempt to avoid them. However, after the day I had yesterday I realize sometimes what happens in a day warrants the use of clichés; sometimes a brain just needs to rely on old stand-bys to get the job done.

Depending on your level of belief in superstition and how your day went yesterday you may understand what I am talking about. Yesterday was Friday the 13th, a supposed bad luck day. Since my eldest son was born on the 13th day, I personally consider it a lucky number, a lucky day.

As a child I avoided stepping on sidewalk cracks so my mother wouldn’t break her back, but I have never been one to avoid walking under ladders or feared black cats crossing my path. Moral of that story: I feared my mother much more than black cats or ladders.

So knowing full well the date, I went about my day yesterday filled with optimism and a sense of good fortune. Perhaps I was a little too smug in my outlook from the outset, you know what they say – Karma is a bitch. See? Sometimes clichés are really the best for what you want to say. Cut to the chase, everyone knows exactly what I am talking about.

So, my day away from home officially started with a haircut with a stylist who delivers a beyond relaxing shampoo and sensual scalp massage. Once confessing I nearly moaned out loud in the chair while she was running her fabulous nails along my scalp, she said I would not have been the first. (Notice how ever since I said this blog was not sexual in nature sexual innuendo has been popping up? It’s like that old childhood game when someone would say: “I will say a word and do not think of the word I say.” They say “blue”, and hence it is all you could think about.)

After my hair appointment, I ran a few errands in record time in the suddenly increasingly warm winter weather. I mailed a small parcel that fit into the letter size slot and was low enough in weight to be mailed as a letter instead of parcel saving me about ten dollars. The postal clerk said “It’s your lucky day!” It did indeed feel like it was, so next I went and bought a lottery ticket. Then I met a friend for tea downtown, later running into my son’s girlfriend and a book club friend to have a visit with as well. The sun was shining; I was on a roll having the most relaxing day.

Then I went home. That’s when the you know what hit the fan, the wheels fell off the bus, and the day from Hell began. I knew I shouldn’t have counted my chickens before they hatched. It was all too good to be true, the cliché is correct: all good things must come to an end.

And, do you think I won the lottery? Not a snowball’s chance in Hell.

My Joy Jar*

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A few years ago on Pinterest the “good things jar” was pinned which basically is: re-purposing an old jar or container of some sort, every week writing down something good that happened to you and putting the slip of paper in the container, then on New Year’s Eve reading the contents to reflect on all the good things that happened to you during the year. Yah, whatever, bah humbug.

Even though I came across this idea on Facebook multiple times, I never considered making one until this year. What spurred me into action was a friend whose 2016 contained significant losses of people she loved dearly, enduring on-going health challenges, difficulties at her job, and also banishing a family member out of her life; however not all was bad, she did go on her lifelong dream trip overseas. At the end of the year she posted about how having the notes in the jar to read did help her realize indeed numerous “good things” had happened in spite of the grief, frustrations and losses she sustained.

What the hell, I’ve nothing to lose and only warm fuzzies to gain was my thought this New Year’s Eve. Perhaps because this past Dec. 31st was one of the better ones in recent memory, I was motivated, I had something positive to put on a paper to start off the year. I would commence documenting every day small joys.

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When I decided to go forward with this project, I blew the dust off an empty container in the pantry, placed it on my desk, writing and tossing my first note inside. Skepticism engulfed me. I wondered if some weeks the best I’d be able to muster would be “did not drop toothbrush on the floor” or “didn’t get dog drool on my pants”. No, I reminded myself, this was not about bad things that didn’t happen hence being good by default, but honest to God “good things” that would actually occur.

Some people write a daily note, some write a weekly note. I figured I was optimistic and realistic with a once a week goal. Yet here I sit, just seven days into the year and I have seven notes in the jar. I now see how this can work from beginning to end of the year. Just by having the jar on my desk in clear sight it is reminding me to acknowledge the good that happens every day. I’ll let you know in 358 days how it has all worked out.

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*Earlier this week I blogged about the meaning of the word “wanton” assuring readers of no sexual content on this blog. Yet, while sitting at my desk writing down a “good thing”, I hollered to my husband (“Mr. Wanton”) downstairs in his office: “Hey, you wanna help fill “My Joy Jar”? Silence. I hadn’t explained the project; he had no idea what I was talking about. A few seconds later he hollered back: “Sure. I’ll meet you in the bedroom.” Someone thinks he might be in for a really good year. 😉

Wanting to be Wanton

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I began this blog by naming it based on my intentions of what I would be posting. The word “wanton” (not to be confused with “wonton” of the Chinese soup and deep fried variety) has three different meanings.

The first is maliciousness or viciousness that is unprovoked, or with cruel intention. No, that is not what I had in mind. Definitely not going to virtually bitch slap anyone here (at least not intentionally). The second meaning involves sexual promiscuity and unchaste loose women, you know, like the ones who cavorted with pirates when their ships landed ashore. So if someone came upon the blog looking for porn or pirate tales, they too would be out of luck. Lastly, wanton also means to play or frolic.

It was my intention for this to be a place where I could frolic with words playfully and flirtatiously. I intended to be here at least several times a week, not just a handful of times per year. I didn’t want each post to take hours to write; rather it would be a place to spontaneously spurt out what might be on my mind at any given moment. Like a kitten walking along a sidewalk that spots a leaf and decides to pounce on it, throws itself on its back, tosses the leaf in the air, then struts off down the sidewalk again with nary a furtive glance back. Yes, that is what I desired to do here, with words.

As I opened the calendar today to the first day of the first month of a new year, I had a surging feeling of renewal. I began to reflect on what my goals were for the coming year. I became possessed by a sense of urgency to return to writing here; writing the way I initially intended to. So here I am with no idea of what might be to come in the days ahead, but ready to write come what may.

Happy New Year! Love and light to all – may you too be blessed with an urge to write, renew, revisit, frolic or pounce.

xoxo

World Sjogren’s Day – Saturday July 23rd!

In an effort to increase local awareness of Sjogren’s among medical professionals in my own community, I prepared the following letter which I plan to deliver next week to local physicians, dentists, nurse practitioners, and optometrists. If you have Sjogren’s and would like to copy and paste any portion of this letter for similar purposes please do so. Thank you to Dr. S. Schafer for permission to use her statistics re: Breast Cancer, and the story comparing them to Sjogren’s at her medical presentation.

Dear Medical Professionals:

Saturday, July 23rd was World Sjogren’s Day, a day set aside to promote awareness of Sjogren’s Syndrome. I was diagnosed with Sjogren’s in 2002. The typical responses I have heard from medical professionals when I tell them I have Sjogren’s have been:

“I have never heard of that, what is it?”

“Show what? Can you spell it so I can do a search?”

“Oh that’s nothing; it’s just dry eyes and dry mouth.”

“Venus Williams has that, right? She still plays competitive tennis so it’s not that bad.”

Though Sjogren’s is one of the most commonly occurring connective tissue autoimmune diseases it gets little mention in medical school lecture theatres. It is rarely diagnosed until several years, sometimes decades, after onset. Sjogren’s , like Lupus, can present with a myriad of symptoms varying from patient to patient, eluding even the most skilled diagnostician. Blood tests for antibodies do not always come back positive especially in early stages of the disease.

As a physician who has Sjogren’s herself was prepping for her most recent Sjogren’s presentation for medical residents, she ran across breast cancer stats. In the US, the 2016 estimate of patients living with breast cancer or a history of breast cancer is 2.8 million. People diagnosed with Sjogren’s are estimated at 3-4 million plus. Both diseases mostly (but not 100 percent) impact women. Both have overall survival rate of approximately 90 percent, or on the other side of the coin, 10 percent mortality directly from the disease. Apparently the medical residents were quite stunned to hear about these comparable statistics. However when it comes to public education and awareness, Sjogren’s lags far behind.

It is my hope you will take time to read through the enclosed information sheets provided by the Sjogren’s Foundation, sharing the facts about Sjogren’s with your colleagues and staff.

If you would like to read a medical text about the diagnosis and treatment of Sjogren’s, I would recommend “The Sjogren’s Book – 4th edition” edited by Daniel J. Wallace, MD.

To find out more about the recent development and dissemination of the first USA Clinical Practice Guidelines for Sjögren’s, contact the SSF office at 1-800-475-6473 or visit their website: http://www.sjogrens.org

If you are curious about my personal experience with Sjogren’s, along with several related diagnoses that followed, please feel free to contact me at xxx-xxx-xxxx or via e-mail: suemw3@mail.com, or visit my blog: http://www.wantonwordflirt.com and click on “Sjogren’s”.  I welcome discussion, feedback or questions from medical professionals or patients – let’s learn together.

Thank you.
Suzanne

P.S. Why July 23rd? World Sjögren’s Day was created to commemorate the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered Sjögren’s in 1933.

Sjogrens Fact Sheet