Monday, April 29, 2013

A Sjogren's Awareness Story

Something We Can All Do: Spread the Word
Julia from Reasonably Well just asked if others had Sjogren’s Awareness experiences to share--and Julia, I do have a story for you and others Sjoggies

In the past, I have participated in what the Sjogren's Foundation calls a Walkabout.  It's a way for patients to raise awareness about the disease while also asking family and friends to join them and make donations.  Now, I don't have official confirmation for this but my guess is that these events are called  Walkabouts since they are actually relatively short walks.  But that is the beauty of them -- patients with autoimmune disease can participate without having to do a taxing competitive event.

So I sported my Sjogren's tee-shirt and joined the other walkers on a sunny, chilly morning.  Besides walkers, there weren’t many people out on the street.   While I enjoyed the walk and the camaraderie of being with others with Sjogrens, I did question whether we were really having much of an impact.  Where were the crowds I had seen at other advocacy walks and the publicity that often accompanies them?

But in the midst of these thoughts, as I was leaving the walkabout I had an interaction that ended up changing my perspective and turned out to be the highlight of that day for me. 

Two young women probably in their early twenties came up to me and asked:  “Can you tell us what this walk is for?  The guy over there," pointing at a spectator, "said it was for people who need to drink a lot of water.”

While there was some grain of truth to the man's description, it certainly is not, as we Sjoggies too well know, anywhere near the real story.  How was I going to explain Sjogren's in a sound bite?  Well, I thought to myself, it might not even be possible to do the disease justice without boring the women. I then figured that keeping it simple might be the best way to go.  The first thing that popped into my head was Venus Williams--a multiple grand slam tennis star with whom most Americans are familiar who also happens to have Sjogren's.

So here’s how the conversation went.

“You’ve heard of Venus Williams, right?"

“Yeah of course”, they said nodding their heads.

“You know how she had to drop out of the US Open a few years back.”  (They were definitely interested now.)  “Well, it was because she has this autoimmune disease called Show-grins." (It might sound goofy, but I always tell people to think of it like this... Show-me-your-grin or Show-grins to help get the pronunciation right). 

They repeated it.

Then I continued, “It’s where your immune system attacks the wrong things like your own body and it can be very debilitating. So that's what we're walking for.” (At that point, I realized that I didn’t need to say more.)

They smiled and thanked me for taking the time and I thanked them asking.  Off I went on with the rest of my day.

But here’s what I realized is important.  Our conversation jogged their memory back to when Venus was diagnosed.  It gave them a relatable figure to attach to this hard to pronounce disease.  The fact that Venus has decided to speak out and to recently become the Honorary Chair of the Sjogren’s Foundation’s Awareness Ambassador Program matters.  It brings attention to the disease and puts a very famous talented athlete behind Sjogren’s.   I’d like to believe that these two women will never forget Sjogren’s.

True, it was just one interaction, but two more people know a little something about Sjogren’s now.  Imagine what would happen if every Sjogren’s patient just educated two people about the disease a month or 24 a year. Then over 72 million more people would know what Sjogren’s is compared to just 365 days before.  Awareness campaigns do not become effective overnight, they really begin with everyday people deciding to take action. 

Friday, April 19, 2013

Top Ten List from the Sjogren's Conference

Majestic DC Cherry Blossoms
I attended the Sjogren's Syndrome Foundation's National Conference this past weekend and I am so glad that I did.  It was a huge effort to travel and participate in the conference, but I can say with complete certainty that any fatigue I am feeling now was well worth it.  It was super amazing to be around other Sjoggie's and have the opportunity to compare notes about how we cope with the disease. Never could I have imagined that I would be sitting in a room with almost 400 Sjogren's patients listening to doctors talk solely about SS. What a relief it was to know that the person sitting next you on you left and right could relate to what it is like to have this disease.

The doctors who presented are not only Sjogren's experts, but advocates in their own right, trying to improve research, treatments, and clinical care for their patients and others around the country.  After this weekend, I am even more inspired and ready to keep working to spread awareness about Sjogren's.

I thought I would share my top ten list from the Sjogren's Conference ranging from the medical to the social.  Now this isn't a Letterman style comedic list as we all know Sjogren's is serious.  Of course, there was so much more beyond this list from the Conference so I promise there will be other tidbits in upcoming posts. 

Top Ten List

1)  One of the biggest obstacles to improving the lives of Sjogren's patients is convincing pharmaceutical companies to fund and invest in research and clinical drug trials for Sjogren's. 

2)  Myth Busting that Sjogren's is more than a "dry mouth and dry eye disease" is critical. I actually didn't meet anyone this weekend who only had these symptoms.

3)  The cognitive symptoms associated with Sjogren's such as brain fog are not thought to be progressive like other diseases such as alzheimers. What a relief!

4)  Up to 50% of Sjogren's patients with neurological symptoms do not present with SSA or SSB antibodies.  This can cause delays diagnosis. 

5)  The average time to diagnosis of Sjogren's has decreased from an average of 7 to approximately 5 years in part thanks to the Sjogren's Syndrome Foundation's (SSF) 50% in 5 years Campaign.  But we still need to get it down to 3.5 years and even lower and lower.

6) Clinical guidelines for how to treat SS and its many manifestations will be coming out soon thanks to the SSF.  These will hopefully help more doctors help us.

7) Venus Williams and Shannon Boxx fellow Sjogren's patients are working with the SSF now to bring attention to the disease. Yeah! Having high profile folks involved, helps bring attention to the disease. (I have an important story to tell here for my next post so stay tuned) 

8)  Sjogren's is as prevalent as breast cancer.  This means that the number people diagnosed with Sjogren's is equivalent to the number of people currently with and who have survived breast cancer.  

9)   Sjogren's is the 2nd most prevalent autoimmune disease. Only 2nd to RA. Awareness and funding for Sjogren's should be on par with other high prevalence autoimmune disease. This is not the case today.

10)  Sjogren's will only become a household name if we stand up, get involved and talk about our disease.  We need to be an army of over 3 million.

Any other readers out there who attended the conference, please feel free to add and keep this list going!  Remember share this list or your own with others to keep spreading the word.

Tuesday, April 2, 2013

Living with Autoimmune Disease: Finally Some Eye Progress!

Image Source

Given that the trials and tribulations of daily life with autoimmune disease sometimes seem to fill my posts here, I try to make sure that I share the good news with readers as well. And I have some good news.

While it might sound like a small thing, at my most recent ophthalmology appointment my physician said "your corneas look good".  This was like music to my ears.  That never happens, despite my best efforts.  The news actually put me in a happy mood for the rest of the day.  I called my husband, my parents, and even some friends after my appointment to share the good word with them.  Now this celebration might sound like overkill, but for me this was truly exciting since I never seem to catch a break.  As many of you with autoimmune disease know, it is not that often that our doctors appointments involve unequivocally positive reports.  My eyes had been feeling better recently--but in the past that has not necessarily meant that I did not have corneal inflammation or uveitis. I have actually come not to trust how my eyes feel as an indication for how they look.

This news was particularly fulfilling, because I actually felt like I had done something which had the effect of improving my health.  I had made a concerted effort to follow a strict routine to care for my eyes, which takes an incredible amount of time on a daily basis, and it was paying dividends.  (I have written about my routine in multiple blog posts click here, here, and here).

It is rare at least for me (and I am guessing for others with AI disease) that our actions seem to matter.  I try to do all the right things my doctors tell me to do to help my condition. It is time consuming and sometimes I have wondered if it makes any difference.  Well, I guess it is currently helping.  At least my eyes.  So I will certainly be keeping up with it.  I know this bit of good news does not mean that my eyes will necessarily stay stable.  But for now, I will just keep smiling and hope my eyes remain cooperative for a while longer.