May 4, 2011

Who Cares About Sjogren's Syndrome?

I try to be original in my posts.  Who wants to read the same-old same-old, or worse, a copy cat?  But, sometimes my fellow bloggers are just too clever and inspiring, and I have to consider trying out one of their techniques.  Can you tell what fellow Sjoggie blogger inspired this post's scheme?

I have a little voice in my head.  Well, actually, I sometimes have a few little voices in my head, but that's besides the point.  These voices don't direct me, tell me what to do, or anything disconcerting like that.  Rather, they represent my inner fears, concerns, or anticipated confrontations.  While perhaps not always enjoyable, they do serve a purpose; it's through my head-voice debates that I often work out my own stance.  Today, one little voice, let's call her Cynical Cindy (CC), really wants you to hear what she has to say:

Health Activist Hearing - Jenny Pettit of UII v. Cynical Cindy of Doom-n-Gloomsville City Council
Subject - Who Cares About Sjogren's Syndrome?  May 4, 2011
Jenny: It's that time of year - it's Sjogren's Awareness Month!

CC: Well, actually, that was April, we're in May.  What happened, drop the ball?

Jenny: No, not exactly.  In April I did talk to a lot of people about Sjogren's, and worked hard to get my employer involved in the upcoming walkabout and build the biggest team.  I'm just in time...because April may be SjS Awareness Month, but in the Philly area that culminates with the Sjogren's Walkabout, on May 7!

CC: Big deal, yet another walk, for a condition no one knows about nor can they pronounce, blah blah blah.

Jenny: It is a big deal.  The biggest deal, actually, for the Sjogren's Syndrome Foundation - the Philly area walkabout is their biggest annual awareness-and-fund-raiser.  And Sjogren's isn't so hard to pronounce ("SHOW-grins"); there are a lot of words people had trouble pronouncing at one point but are commonplace now.

CC: People may learn to pronounce it, but they still aren't going to care about a condition so few people have.  Even doctors & nurses who've heard of it before you bring it up say "that's really rare". 

Jenny: Ah, CC, you must not have heard the stats.  Sjogren's is the second most common autoimmune disease.  For comparison, there are approximately 400,000 MS cases, 1,500,000 Lupus cases, and 2,000,000 RA cases in the US.  At about 4,000,000 Americans, there may be more Sjogren's cases than the other three combined!

CC: If there were 4 million people walking around the in the US with Sjogren's, we'd have heard of it before now!

Jenny: If there were 4 million DIAGNOSED patients, yes.  But a significant number of that 4 million are undiagnosed.  Sjogren's is poorly understood (if even known) among medical professionals, and the symptoms can be so varied a patient may not even think to mention, which makes it very difficult to even pursue the diagnosis.  As it is, the average length of time from the onset of symptoms to diagnosis is 7 years.  Think of how many patients may be in that pipeline!

CC: May 7 is a big day around here - weddings, Holy Communions, even early graduation parties.  No one's going to come to a walk for some underdiagnosed oddball illness - it's not even sexy!  They symptoms are dry eyes and dry mouth - anyone can have that after a good night of partying, they're not going to care about your pity fest.

Jenny: Oh CC, you need to visit the Wizard of Oz and ask for a heart yourself.  So bitter!
But until then, I'll fill you in.  Dry eyes and mouth are traditional hallmark symptoms of Sjogren's Syndrome - but they just scratch the surface.  First of all, they can be so severe that patients have to continually monitor their eyes for scratches, lesions, and repetitive infections, and incur on average 50 times more dental work than a 'normal' person.  Spicy or well-seasoned foods, sandwiches without mayo or another lubricant, and other common foods become extremely difficult to eat; voices become scratchy at all times; patients even have trouble speaking from the dryness.  But, Sjogren's can also affect every system in the body - from neurologic effects to organ failure and more, any and every part of their body can become involved.  Patients have ongoing symptoms including chronic widespread pain, extreme fatigue, and "mental fog", which impact every aspect of their lives!  Early diagnosis and treatment plans are the ONLY way to slow the progression of the disease and preserve the best quality of life.

CC: Ok ok, so it's a serious condition - why would anyone want to deal with something so burdensome on such a great weather day (May 7 is supposed to be warm - but not hot - and dry with some sun)?  Not gonna happen, my friend.

Jenny: Wrong again, CC.  This year, the walkabout has a brand new location, at the Philadelphia Zoo!  Walkers will get FREE entry for themselves and their entire families, and may even be eligible for free parking!  The event will also host a health fair, facepainting & craft for kids, snacks, music, and more.  The Sjogren's Walkabout is THE place to be!

CC: Well, Jenny, you seem to have all the answers, don't you.  Well I have one more question - quick!  Tell me where I can get more information about Sjogren's and sign up or make a donation for your walk?  Ha!  Bet you don't know that so quickly!

Jenny: This just isn't your day, CC.  I can tell you!  For more information about Sjogren's Syndrome, symptoms, and diagnosis, visit  To sign up for the walkabout and/or make a donation (yes, there's still time), visit - full directions are available on the site. 

CC: Blast!  Foiled again.  Well, Jenny, I guess you've won this battle.  That new role as a Sjogren's Awareness Ambassador is going to fit you well.  Congratulations and I hope you have a great walk...but don't be fooled, I'll be back!  With enough persistence, Cynicism will win the day!  Bwahahaha.

Jenny: (Knowingly shakes her head, while giving CC that bittersweet smile that parents give their children to say "silly girl, guess you have to learn the hard way", Jenny watches her defeated alter-ego fade out of existence.  She'll be back, but Jenny will be prepared for the next round when it comes.)

Ruling - Activist: 1, Doom-n-Gloomsville: 0
America WILL Care About Sjogren's Syndrome!

Scary place inside my head, isn't it?!  Sometimes I don't even want to hang out there.  But, I hope you gained something from the hazardous trip:)  Please check out the sites Jenny provides to CC, and if you're in the area, maybe I'll see you Saturday!


  1. Just found your blog and I love it. I am sitting here with ice bags on my shoulders, lower arms, knees and ankles -- in order to relieve pain. The pain comes from a busy day at my usually sedentary job. I am so thankful to be working I do not want to lose my job by not being able to carry out these occasional physical tasks (packing boxes).

    I do have an Invisible Illness and I have pain everyday that is not totally relieved by diclofenac -- which is what my MD feels should be enough. It's nice to know that I am not alone. Thanks for your "blog" support.

  2. Rah rah rah! Sis Boom Bah! GOOOOOOOOO team Jenny!!

  3. Good luck on the walk! It should be fantastic weather and scenery! I am jealous! I had wanted to be a part of the walk this year. Unfortunately, one of our camping trips was planned for the same weekend. Next year!!!

  4. Mama - Sorry you won't be there:( I know in the past few years at least it's been the first Saturday in May, so if you're planning for next year maybe see about keeping that weekend open?

    Julia - I REALLY hope you had pompoms for that. Because that's what my mental image has. And it's a good one.

    Anne - so nice to 'meet' you!! I'm glad you're here and find something valuable. I get pretty odd in some of my posts but if you were ok with this one I think you'll enjoy it, haha. As for your work situation...I get where you're coming from. There are a LOT of times I insist on doing something that's not great for me just out of the desire to be a 'normal' employee (I disclose everything at work so it's not as if people don't know). At the same time, please remember there are a number of options out there for dealing with these unusual tasks in a way that's better for your body, and legal things in place to protect you. If you find yourself moving boxes because of a change in location or something that's not even part of your job, you REALLY can draw the line. But regardless, I hope you feel better soon and that no more silly tasks come your way!

  5. Julia get away from this blog !!!!!!

  6. THANK YOU, Jazzcat, for picking up on that! Yes, Julia (Reasonably Well) inspired this theme:)


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