Moving forward

Updated August 27, 2023

“Right now it would be a step forward just to get a standardized approach to systemic symptoms and have them recognised. Many patients don't get any systemic evaluation at all.”

~Malin, RN, and Sjogren’s patient, March 2023. This comment is exactly why I created Sjogren’s Advocate. Most of Sjogren's is systemic, not dryness. Yet, as Malin states, "many patients don't get any systemic evaluation at all".

Thanks to your generous donations, Bexi (Rebecca Lobo) and I have upgraded many pages and added new self-advocacy tools to Sjogren's Advocate. It is too big a job for me to do formatting, design, and administrative tasks on my own. When we work together, we can produce twice as much information in a more user-friendly format.

Most of the work that goes into creating and maintaining the Sjogren's Advocate website happens behind the scenes. This blog post shares what I do, why I do it, and why I need to ask for support so that I continue adding new content.

Why I do Sjogren’s advocacy work

When I went to medical school in the 1980s. Sjogren’s was dismissed as a mild sicca (dryness) disease. There was no lecture and no further information in the textbook. I already had severe dry eyes a the time, but was reassured by the “nuisance sicca disease” message that if I did have Sjogren's, I would be fine. I could not have been more wrong.

Misperceptions like this are why so many people with Sjogren’s remain undiagnosed. Systemic manifestations continue to be downplayed or ignored. My journey to diagnosis was typical except that my medical background helped me research the disease and advocate for diagnosis and care. I had symptoms of Sjogren's since my teens but it took decades to get diagnosed. Despite living with flu-like fatigue s a young adult, I managed to function at high level. This all changed at age 44 when I developed severe gastrointestinal symptoms, incapacitating fatigue, lightheadedness, and excruciating new headaches. I went from working full time and being an active parent to spending 16 to 20 hours a day in bed. My doctors where stumped. No one recognized my typical Sjogren’s and POTS (postural orthostatic tachycardia syndrome) symptoms. Like me, they had no Sjogren’s or dysautonomia training. After multiple tests came back normal, I was told that my symptoms were probably from stress or a functional (psychosomatic) disorder. I lost my career, my financial stability, and my ability to care for my children. I knew I had a physical illness, but after standard tests were all normal, I was on my own to figure it out. A year into this ordeal, I started researching the medical literature from my laptop in bed. What I learned was key to getting diagnosed with Sjogren’s, and later, with POTS. I was able advocate for diagnosis and treatment because I knew how to read the peer reviewed literature and use that information to make a case that I had seronegative (SSA negative) Sjogren’s. I am passionate about helping other Sjogren’s patients, due in part to my own difficult journey to diagnosis. I created Sjogren’s Advocate so that I could use my medical knowledge and research skills to help other patients advocate for the care they need.

Why I am asking for help

When patients send me stories about how Sjogren’s Advocate has helped them, it inspires me to keep working on this website, despite my health challenges. Some readers assume that I must have mild disease and professional support to do this. Until the first GoFundMe campaign, I had no regular professional help with the website.

Here is the reality of my physical stamina: -I would practice medicine if I had mild disease. I have not been able to work for 22 years. I can no longer travel or do many normal things. -Despite POTS treatments, I cannot stand still for more than 10-15 minutes without getting lightheaded. -Prolonged sitting is also a problem due to POTS, and my other rheumatologic disease, spondylitis. This means I can't work more than 1-2 hours at a stretch. -I have about 4 hours of “upright time” to use each day for both Sjogren’s advocacy work and personal tasks. I usually spend 2-3 of my 4 upright hours working on Sjogren’s Advocate. -Most of my day is spent managing my health. Without my extensive self-care routine, especially exercise, I would not be able to do this work at all.

I have been working on Sjogren’s Advocate for more than five years. The design, formatting, and administrative tasks are becoming too cumbersome for me to manage on my own. Having steady professional help from Bexi has freed me up to focus on content, and not get mired in design and formatting, which are not my strong suit.

My Sjogren’s advocacy work

1. Sjogren's Advocate- the website and blog

Before writing a new Sjogren's Advocate page or blog post, I spend hours researching, reading, and organizing the content. This is what makes Sjogren’s Advocate a unique and powerful resource. Clinicians are more receptive to information when they know it comes from a reliable academic source. The citations from the peer reviewed literature are key. The essential Handouts for Clinicians page shows you how to choose and share information with clinicians.

Blog posts: It takes 10-30 hours to write a new blog post and transfer it to the website. Once a blog post has been written, it is not a simple copy and paste to put it on the website, but a formatting jujitsu. It takes an additional 2-4 hours to create links, make the page searchable online, and send out an email to subscribers.

Webpages (everything not in the blog section) A typical webpage takes 50-60 hours to write, format, and publish. It took me 10 hours just to format a recent new page. It is nearly impossible for me to do a good job formatting the mobile (cell phone) version because of my Sjogren’s-related visual impairment. These are top priority tasks for professional design help.

Other ~ I update the Citations and Glossary pages when I post new webpages. This takes 1-4 hours. ~I periodically edit pages and add new information to keep Sjogren's Advocate up to date. ~ Administrative tasks beyond formatting and design take both time and money. I have been paying administrative costs out of pocket since I started this website five years ago. This is not financially sustainable in the long run. 2. Staying up to date

Each week I review a new list of Sjogren’s related articles from the National Library of Medicine (PubMed). I choose pertinent articles and read them in detail with a critical eye. This means I don’t just take the authors’ assumptions and conclusions at face value. Many authors start off with incorrect assumptions, described in Myths About Sjogren's, that impact their interpretation of the data. It takes time to locate, read, annotate, and organize these articles. This system allows me back up my work with citations. I maintain an online personal library of more than 1000 articles.

In addition to keeping up on the Sjogren’s literature, I attend several conferences each year related to Sjogren’s and dysautonomia. A note about AI My research has become even more complex since the recent explosion of artificial intelligence (AI). Routine internet searches may produce fake journal articles that are generated by AI. These articles look real, and may easily fool a clinician who is not deeply familiar with the topic. I have had patients send me AI-generated Sjogren's articles which are fake. I now need to verify every article on PubMed. 3. The Sjogren's Foundation

I am not part of the Sjogren’s Foundation, but I do have frequent contact with them, and frequently link to their online resources. I served as a patient representative during the creation of both the Systemic and Pulmonary Clinical Practice Guidelines.

4. Patient support groups I participate daily in online Sjogren’s communities, including Smart Patients. Patient stories and feedback help me prioritize my work.

5. Twitter ("X")

I am one of the key voices raising awareness about Sjogren’s on medical Twitter ("X"), and will stay there as long as it continues to be a good way to share information with MDs, including rheumatologists. I have had lively discussions with them about Sjogren’s myths and misperceptions. I frequently point out the need for better clinician awareness and education.

6. Presentations

Over the past decade I have taught more than 200 primary care clinicians and a few specialty groups about Sjogren’s. This work has helped me understand clinician’s perceptions and misperceptions about Sjogren’s. I have also presented at patient education meetings, including the Sjogren's Summit and at a Q & A session with Dysautonomia International's Lauren Stiles following her excellent presentation about Sjogren's and Dysautonomia.

I hope to continue my work on Sjogren’s Advocate if my health allows. Your ongoing support will help make this happen.