|Majestic DC Cherry Blossoms|
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.