May 31, 2011

You Are Loved & Important in My World

Photo found here

Trying to maximize my membership in the amazing powerhouse that is WEGO Health, I posted a discussion last night about a particular struggle I'm having in my online communities.  Responses are trickling in ... and the buzz around the issue promises many more in short order.  This is certainly a question I think we'll be kicking around for some time. 

In the meantime, however, I wanted to share with you this struggle the "health community leaders" took on, as well as how we are working to aleviate it.  I want you to know how hard this group works for our communities, so you understand that we are not just writers here to impart our so-called "wisdom" and move on, but that we are listeners, carers, and supporters here for you.  We love to share our experiences - but not as much as we love to INTERACT with you and try to be what you need us to be.  My post is just one type of issue we work on, alongside topics such as providing real value to community members, writing purposeful posts, and finding out what concerns are top for our members.  Many of you are leaders of your own communities, so you understand how much care we put into what we do.

Lately, I'm struggling with how to work with people who bring negativity into groups.  This is a problem I've seen recur in many places, but I'll use my most recent example from Facebook.  In one group, a person asked for some positive things any of us have gained from our experiences as chronic patients.  I was so excited, I quickly jumped in with my two cents.  A few others followed suit...then things took a turn.  A few people shared their frustrations with the world (which are EXTREMELY valid, of course!), but in an overwhelmingly depressing way.  They shared their decisions to simply "shut up", "keep it to themselves", and "stop bothering" everyone else.

To be totally honest, I am a bit unhappy with them for doing this in a conversation specifically asking for positives.  If they really had nothing to add and wanted to share their frustrations, I think it would have been more appropriate to create a new chain.  But, it wasn't my post and it's not my place to say, so I haven't.

What I did, however, was attempt to inject some positive back in.  I wrote another comment, insisting that as real as their bad experiences have been, there are still a lot of people out there who do believe them, support them, and want to talk with them.  I also discussed some options & resources out there for trying to communicate with friends, family, & doctors who are dismissive at best.

The reaction I got was someone telling me they were just trying to share their frustrations and "someday they'll learn to just shut up".  Now I'M so frustrated.  Another person has been commenting to this poster as well, suggesting that she sounds truly depressed and encouraging her to seek help for the depression.  I added one more comment trying to convey that "shutting up" is exactly the opposite of what I'm encouraging.  I said, tell me anything you want including these bad things, but at least feel a tiny bit better having done so knowing that I do believe, care, and am not the only one!  This person has since posted again, sharing a very scary train of thought...but finally ending on the note that perhaps they will try to talk with us more in the group and see if it can help them.  I have no idea where this will go.

I know from past experience that I may have completely missed the mark here.  My best intentions may have annoyed her instead of encouraging her.  I'm sorry if that's the case, though I can't really regret having said what I did because I thought it through to the best of my ability.  But, it still left me confused, frustrated, and out of ideas.  So I turned to my handy-dandy WEGO community, and posted a discussion on this topic.  I must have hit a nerve because by the next morning there were Tweets and Facebook posts flying with links to the discussion.  It makes sense - in that community of leaders, we must all run into this same problem.  The impression I have is that it isn't an easy question for anyone - many people seem to be reading the discussion but are still considering their responses before posting.  I'm really looking forward to what my peers will say.

In particular, I posed these questions:
Do you run into similar problems in your communities? 
How do you balance wanting to encourage positive behaviors without isolating those who really need to vent? 

The worst part of the conversation on Facebook was when the poster felt that I hoped they would "shut up".  People need to vent, to be validated, to be heard.  I believe we, as chronic patients, actually owe it to each other to hear the negatives when people need to release them.  But we also deserve to enjoy ourselves and have a place to turn that provides a reprieve.  Some of us even use a direct approach where we vocalize 'positives' and hope as much as we can.  What are some ways to balance everyone's needs, and support those who are down without letting everyone wallow in despair?

As more replies are posted to my WEGO discussion, I'll try to incorporate them into my activism activities.  I welcome your thoughts on the topic if you have any you wish to share.  Above all, I hope you feel as loved and important and we hold you to be in our hearts.  Everyone needs to know someone's looking out for their happiness:)
Photo found here.

May 26, 2011

"UII" Are A Family

Miles 4 Mark Team at the 2010 Light the Night Walk

“UII” Can Spread Hope!
Cancers, especially blood cancers, are part of the family of ‘invisible illnesses’.  Patients have few (if any) outward marks that indicate to others the life-threatening battle they are facing.  That’s why it came as such a shock to my family when Mark, my husband’s step-father, was diagnosed with Lymphoma in 2008.
My Family's Story
Mark is a bear of a man; a true ‘gentle giant’.  He’s soft-spoken; you can count the words he says during dinner on one hand, and he’s never riled by the boisterous family activity going on around him.  He’s the type of guy you can’t imagine getting a splinter, let alone a disease that carries such a terrifying potential outcome.
The 16 months after his diagnosis went surprisingly quickly, as Mark began chemotherapy treatments and the agonizing waiting periods.  Updates came at bi-weekly family dinners, with rarely any mention of side effects or the emotional strain this had to have caused.  An unexpected update came the day my mother-in-law, Debbie, called to tell us Mark had been declared in complete remission.  Debbie didn’t cry when she told us Mark was diagnosed, but she cried when she told us he was cured.
After this pivotal day, we found out how Mark & Debbie got through all the treatments, scares when his progress wasn’t as anticipated, untold side effects, and “wait & worry” times.  They had the LLS.  This organization provided my family with the resources, experience, and support they needed to maintain composure throughout the process.  Debbie described how they pointed Mark in the right direction at various turning points.  Then ‘Silent Mark’ started to talk.
Ever stoic, Mark never got into the details of what he went through with his treatments.  Other than a buzzed haircut and light appetite at those dinners, I may never know what effects he experienced.  But I know what the LLS means to him.  I know his passion to support the organization that supported him has broken his shell, and is infectious to the rest of us.  Mark joined the executive committee for the 2010 Light the Night walk, and our family fell in line behind him.  We learned that innovations developed with funding from the LLS are often repurposed to battle other cancers.  I knew that it was in part because of them that my own father had more reason to hope when he had his kidney cancer scare months later.
“UII” (Understanding Invisible Illnesses) aims to utilize the power of collective knowledge by pooling the information, resources, and experiences of many patients and caregivers with the purpose of benefiting others and ultimately spreading hope.  The LLS epitomizes these goals.  Throughout the year, we receive messages from the society sharing the hope-filled stories of previous patients and the relief felt by those who’ve been touched by the LLS’s programs.  As I mentioned, the LLS funds research and innovations that are frequently recycled for other cancers & diseases.  I’ve met with regional organizers and a national vice-president from the society, and can vouch for the enthusiasm with which their people approach their work.  “UII” are proud to support the LLS by joining the walk and encouraging donations.  They’ve given continued life, connectivity with other patients, renewed hope, and more to thousands of people already – the least we can do is give a little bit back.

As you know, my policy is to only actively fundraise among my community for 3 causes in the year which are especially close to me: Sjogren's (my condition), Autism (for my Aspie brother), and the LLS (for Mark).  See my fundraising page here for information on the LLS or make a donation.  Please use the share buttons below to post to Facebook, Twitter, or email your friends.  And thank you, as always, for your support.

May 23, 2011

WEGO Webinar on IRL

 Photo found (and subsequently photoshopped) here.

Ok this one cracks me up just a little bit. 

Sometimes I ask myself questions to assess what I'm doing with my time and how well I'm doing it.  Lately, one of those questions has been "in relation to my role as a health activist among activists, what do I bring to the table?  What value do I contribute?  How am I unique in this community and how can I leverage that?".  And no, I'm not being self-deprecating or modest; I KNOW that I add value, I'm just trying to focus in on how exactly I do that so I can do it better. 

My age is sometimes an oomph factor...though less and less these days (darn kids speaking up and making me feel old).  A pretty solid perspective I bring is that of a working professional & chronic patient.  I like this role, it's become one of my favorite angles to portray.  I think my story is inspiring - not even so much because of what I do to make this work, but because I can go out there and HONESTLY speak from the heart about cooperative employers and trying to make accommodations a viable solution.  I know many people listening either truly can't carry the workload or will only be able to for a while longer, but it always helps to have a real basis for hope for the future.

In the past few months, it became obvious that the other reason people are interested in my work is because of my experience with IRL - In Real Life - activism.  I think you all know some of my stories about presentations at Villanova (if not, go back a few posts), and of my new hat as a Sjogren's Awareness Ambassador (and on that note, remind me to tell you about the VERY cool things going on with that soon).  I've even had the occasional friend ask for my thoughts on some IRL ideas of their own.  I began IRL, then moved online, and LOVE to bring them together (my recent panel appearances related to social media speak to this idea). 

So, how did WEGO Health, the trail blazers of all things activist-related, decide to make use of my experiences?  By having me do a webinar on IRL activism.  That's right, a WEB-BASED session on doing things in-person.  I love it!  How much more to the point can you get?  We don't exist in isolation; we aren't just a Twitter persona OR a face behind a podium.  That would be like saying we either have one symptom or another, only see one type of specialist, or even that we only enjoy either the ice cream or the cherry on top!  Ridiculous! 

I do Tweet, blog, Facebook, and play with a variety of online tools...but I also talk, educate, coordinate, and put myself on a stage, or in a classroom, or in an audit room where I simply won't stop "sharing".  I get excited when I bring these worlds together; synergism is an awesome thing.

You knew, of course, that this post could only end one way - with a link to sign-up and a call to action: register now to attend the webinar!  Once you spend the grand total of 20 seconds or so to register, you'll receive a link and instructions for logging in on Thursday (5/26) at 7:00PM ET  You are able to submit specific questions ahead of time, as well as during the program via the webinar tool and even on Twitter using the designated hashtag!

May 22, 2011

WEGO Health Activist Speakers Bureau

I just joined the WEGO Health Activist Speakers Bureau! As you know, I’ve already been able to do two live panel presentations with WEGO, along with three upcoming web/video based projects. So, when I received the email informing me about their new Health Activist Speakers Bureau, it seemed obvious I should formally sign up to keep these opportunities coming!

Signing up was easy and took just a couple minutes. I indicated a few areas/topics/conditions I feel qualified to speak about, my willingness to travel, and a comment about my favorite/most successful project to date. Voila! I’m in on the list!

I thought some of you might be interested in learning more about it as well – it’s a great way for Health Activists to share our stories, raise awareness and get the word out about the work we’re doing. Don’t worry if you don’t have a “health activist speaking” resume, you have experience living with your challenges, communicating them to others, and an interest in developing understanding across society. But, if you are interested but hesitant, feel free to ask me about my experiences presenting with WEGO. I’d be happy to discuss your concerns! And, submitting your application won’t obligate you to participate in any specific activity, so you can always decline if you are uncomfortable.

Members of the WEGO Health Activist Speakers Bureau receive exclusive invitations to present at conferences, speak to members of the media, and be featured on WEGO Health.

Interested in joining the WEGO Health Activist Speakers Bureau? Apply today! It only takes a few minutes and they’ll email you as soon as they have opportunities relevant to you and your interests.

May 18, 2011

Guest Post: A Very Special Note

This guest post is courtesy of my brother, Jon Dorfman.  I've mentioned him before, most notably in my post, My Oxymoronic Brother and for his participation on the II panel for the VU + UII project in February.  Jon has Asperger's Syndrome (this makes him an 'Aspie'). 

Misdiagnosed as a toddler, he went through many rounds of added and revised diagnoses until he was finally matched up with this condition on the 'high functioning' end of the Autistic Spectrum at 8 or 9 years old.  Fortunately, his theraputic early school environment had been right either way, and he had every support therapy/service our parents could arrange to help him actively learn things that are subconscious for us neurotypicals (NTs): how to communicate verbally, to relate to people around him, and other social skills needed to succeed.  Some didn't work so well and there were P-L-E-N-T-Y of setbacks, but even if it felt like 10 steps backward, there was at least the eleventh step forward to hang onto.

In college, Jon became HIGHLY involved with the Kinney Center, acting as a summer camp counselor, school-year social skills instructor, and resident media darling.  You can see just a few of his interviews (articles and videos) here: Kinney SCHOLARS Profile, Philadelphia Inquirer story, Twitter, his startup website, or his 2nd NBC interview.  Google him if you want more, I'm tired.

Jon wrote the Facebook note recreated below immediately following his graduation this past Saturday from St. Joseph's University.  It is addressed to his friends - friends he made in college and who filled a social void in his heart with amazing speed, affection, and compassion.  Even though he (accidentally, I'm quite sure) left out his favorite sister, his note is a rare glimpse into the SOUL, the emotion, the heart, and the logic of an 'Aspie'.  When something in it reads strangely, pause to understand that it is a unique expression of something we were told Jon would never be able to communicate. 

Hear the 'voice' of Autism once the shackles are broken...or, once we've learned to put them aside.

A very special note to EVERYONE who helped me get through despite myself.

So, let's start out with a simple advertisement, shall we?

Fine Arts Major: 4 years.

College Education: $120,000.

Yelling at the Registrar staff every God-damned semester: 40 courses.

Increasing to anxiety levels untold of for centuries while waiting for grades: 124 credits.

Graduating 2nd out of 1,112 students despite all odds and predictions: PRICELESS.

I realize that I would not have made it this far without the help of several (teams of scores of you) people in my life to keep me going.  I was never supposed to reach college, much less graduate from one. (The official Rub-it-in-the-doctor's-face Award goes to the doctor who thought I was mentally challenged based solely on the fact that HE did not realize Crayola had changed the name of a crayon from "flesh" to "peach" when I was two. Congratulations! You're a freaking moron!) But there were many people who never gave up on me, even when I wanted to.

I can still remember my anxiety spat with my parents that I felt that I couldn't go through with college right before the first day of Freshman year. They calmed me down and persisted that I could. I got to college, went on a couple of tirades, and landed in some hot water in the first semester. Rather than kicking me out all together, the University saw my potential before I even did and gave me a second chance to pull myself together. So, I did just that.

The second half of Freshman year was a depressing time for me. But those who mattered didn't mind, and those who minded ended up not mattering. They reinforced in me, the idea that I was never alone, despite my being single and never having gone on a date before. My friends actually cared about me, and that was empowering to me to say the least.

From September 2009 to October 2010, I suffered 13 months of a debilitating depression.  Debilitating to the point that I needed daily reassurance that I was a good person, and that I had Goku-level amounts of potential. My friends are pretty much (in my opinion) the only reason I survived Junior year emotionally intact.

And now, I've completed my finest hour thus far. I have graduated 2nd out of 1,112 people in the Saint Joseph's University Class of 2011 (that is 2nd by virtue of my placement in the line, not by GPA). I defeated all of the odds that my doctors placed on me when I was two-years-old.  Much more to the point, the people who minded and didn't matter... they were at least a year ahead of me during my Freshman year. I ended up graduating before a vast majority of them. (One person comes to mind, who is entering his 8th year Undergrad at SJU next year [with no known or aparent reason]. His parents must be so proud...) They claimed many battles over my peace of mind, but Karmic Retribution helped me win the war.

Much more to the point even than that, I reiterate that I could not have done it all by myself. I have the one thing those people will never have, even if they ever get their college degrees: TRUE FRIENDSHIP.

One of my best friends greeted me after graduation just to tell me that he was proud of me, and that I can do anything I set my mind on.  Another of my best friends called me later in the evening from Harvard to tell me that she was equally as proud of me and that I "deserve everything good [I] get." Mind you, this was all the way from Harvard. I think I should be proud of her a little bit more, though...

So what did that advertisement in the beginning have to do with all this? Well, here's the last line of it that I intentionally left out until now:

There are some things money can buy, for everything else, there’s HOPE.

I overcame all adversity, shallow odds, and half-baked prognoses to prove that I am powerful. Not by my physical nature, but because of my emotional and mental nature. Yes, I am an Aspie, but this little Aspie has an army on his side willing to fight the good fight alongside him for better or for worse.  And I could never be more grateful for that. Thank you. Thank you all. I love you all with every fiber of my being. Grad pics up soon. I promise.

May you all find peace with yourselves, within yourselves. And never stop believing!

May 16, 2011

Diagnosis Trail (Repost)

I've been swamped this month - a week of out-of-town training, the Sjogren's Walkabout, my baby brother's graduation, and kicking off two engagements at work (one I'll be leading) only scratched the surface.  I appologize for my absence.

Following some words of advice for when stuck in such a blogging dry spell, I revisited some of my original posts.  Interesting, in rereading one about how I was first diagnosed with Sjogren's, I realized it would not only be convenient to repost it - it would be wise.  I had few readers when I originally wrote this post nearly 2 years ago, and now with a more integrated audience across multiple social networks...well, I think it's time for a repost.  Please check out my story - just one of the millions chronic patients could tell you - and remember that it is by sharing we make progress.  By sharing our own stories and stories of our friends, we may spark the missing clue in someone's diagnosis puzzle!

My Diagnosis Trail (originally posted in September 2009, minor edits made for current info)
Everyone's diagnosis story is different. The average diagnosis time for my main condition (Sjogren's Syndrome...which is actually technically called Secondary Sjogren's Syndrome even though it's my 'primary' diagnosis because it occurred alongside other diagnoses) is 7 years and the typical patient getting diagnosed is a woman in her 40's. I was diagnosed at 15 which is very young, but that doesn't mean I was diagnosed quickly. (For reference, I am now 25.)

I can trace my symptoms back to 2 years old. At that age, I had so many chronic ear infections that they had to insert tubes to keep my ears draining. That alone is not so unusual for a toddler, but it was the first part of a loooong pattern. By 4 years old, I was experiencing intense leg pain, especially at night. The kind that kept me (and my parents) up overnight with my crying and thrashing. The pain wasn't just in my joints, but seemed to come from the center of my bones. There isn't much that can soothe that kind of pain, and at my age all they could give me medication-wise was Tylenol (I've never had much luck with Tylenol). My doctors finally did some imaging tests, but since they saw no breaks or tumors, they said I had "growing pains". These leg pains continued regularly ever since, though I now know the familiar onset symptoms and can intervene more effectively with ibuprofen.

By the time I reached school age, I was experiencing a regular cycle of infections throughout the year...respiratory infections including bronchitis, urinary tract infections, stomach bugs, and the eye problems started. Anyone familiar with Sjogren's knows the two most predominant symptoms are extreme dry eyes and dry mouth (but please don't assume that's all there is to this disease, I'll explain more later). My eyes were ALWAYS dry and gritty, I always thought there was something in my eye, and I produced a thick secretion. I constantly picked at and rubbed my eyes, which is something my classmates never understood but still remember to this day. Doctors gave me all kinds of drops and ointments, none of which made a dent into the discomfort. On top of all these things, I always felt sick in the morning when I got up for school. Many days, I wound up in the nurse's office with a stomach ache, and when I told her I did not eat breakfast (trying to eat in the morning itself made me nauseous), she decided I was trying to get out of class. I missed on average 20-30 days of class every year. My parents were my only believers, the teachers and administration tried to tell her I was a hypochondriac trying to get out of was absurd! I LOVED school. I HATED missing time. Some days I still want to go back to my elementary school, find anyone who was working there when I attended, and hand them a list of my diagnoses and symptoms.

Then I hit high school. I had joined the color guard, which participated in band camp the two weeks prior to the beginning of the school year. We spent 8 hours each day for two weeks in the sun learning our show (with few water breaks or chances to reapply sunscreen). Once classes began, we rehearsed 3 hours Monday and Wednesday evenings, had football games on Friday nights, and spent 8-10 hours on Saturday rehearsing before going to our competition for the week (we finally got home around 1am most weeks). I had not spent much time in the sun growing up, but for my family that was normal. This was the first time I had gotten a real tan! It was also the most exercise I'd ever had (I played hockey in elementary school but other than that I was more of a book worm than an athlete). I had no way of knowing I had opened Pandora's box.

It is my personal opinion, based on research and experience, that the appearance of an autoimmune condition (of my diagnoses, Sjogren's, scleroderma, and possibly fibromyalgia are autoimmune conditions) is the result of a genetic predisposition and an environmental trigger. In another post I'll discuss my family history but for now suffice it to say we are RAMPANT with autoimmune disorders, and it turns out *tada!* the sun is my environmental trigger.

So to return to the color guard story, our season began with band camp in August and ended around Thanksgiving. At Christmas time that year (my freshman year of high school, 2000), my mom noticed a small bald spot near the back of my crown of my head. It was about the size of a pencil eraser. Since I had been pulling my hair back tight for guard, we figured I probably just needed to be careful and let it grow back, but we also kept an eye on it. By Easter time it was the size of a quarter and we started seeing dermatologists. The first one we went to looked at my from the doorway of the office and said "alopecia, nothing I can do" and walked away. Later, when I looked up 'alopecia', I found out that's really just a term for the symptom of hair loss, and has NOTHING to do with the cause. Obviously we went to another doctor. In the meantime, somehow we were directed to a rheumatologist (and I had begun having severe dehydration issues, serious enough for multiple emergency room visits and one overnight admission). That rheumatologist told me to insist that the next dermatologist do a biopsy of the area. At this point he was considering discoid lupus, along with other things. So, when I went to a new dermatologist who was convinced it was discoid lupus from a visual exam, I still asked her to do a biospy anyway. Good thing, the result was localized scleroderma.

Once we got the scleroderma diagnosis, everything sped up more. My rheumatologist was a doctor for adults, and though I was 15, he said he was not comfortable treating a pediatric patient. He helped direct me to a doctor at DuPont Hospital for Children, who happened to be world-renowned and a top doctor to boot. Once I got to DuPont, that doctor and his fellow (who would takeover as my rheumatologist when the original doctor finally retired) were a Godsend. They quickly came up with the Sjogren's diagnosis (and therefore, treatment plan), and over time pieced together many of the mystery symptoms I had been coping with.

I thought at first I'd have to give up everything I had just gained - I was told to stay out of the sun, use all kinds of sun protection, drink all the time to stay hydrated, and a million other things. When I joined the color guard (remember, the reason I had so much sun exposure in the first place), I became a new person in many ways. I had just started high school, found a niche (and one I was great at!), made a ton of new friends, looked better than ever...the list goes on. I saw it all slipping away - how could I be in color guard when I was supposed to stay out of the sun and drink water all the time (as I said, we had very limited water breaks)...oh and I forgot to mention that since the season extends into November, I had to battle the cold with my stiff arthritic joints, and especially with the Raynaud's diagnosis I was told to avoid this situation as well. It seemed that all doors that should have been opening were closing - travel plans, a social life, etc etc. However, my doctors were great. They listened to my fears and helped me through the adjustment period while also helping me figure out how to hang on to the things that were most important to me.

If you don't have chronic illnesses, please understand that this is only the story of how I got the first set of answers. After that year, I had a name (well, names) for my most pressing problems, but these conditions change. Over time, other diagnoses developed or came to light, and like most people I know in the II world, my diagnoses list has grown and probably will continue to do so. By definition, none of these chronic illnesses will ever go away, so I just have to keep adding. Conditions can mask or imitate each other, which adds to the confusion and evolving diagnoses list. However, getting through this stage was crucial. It was the point at which I was able to move toward control.

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!