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.

3 comments:

  1. So glad you were able to attend the conference, thank you for sharing what you learned. I hope to attend a national conference in the future. Looking forward to your future posts.

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  2. I didn't know if I would be well enough for the trip and made a late decision to go. It was well worth it! Thanks for reading. Your comments encourage me to keep writing.

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