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Living With Sjögren’s

Patient Stories

Eden's Story

Support Group Leader Profile
Eden Hagan – Brantford/Paris

I was diagnosed with Sjögren’s in 2009 after several years of suffering with blocked parotid glands. I was also experiencing the typical markers of Sjögren’s: dry eyes, dry mouth, profound fatigue and joint pain,all of which were a mystery to the doctors. I made multiple trips to the ER in excruciating pain from parotitis until I was eventually seen by an ENT familiar with Sjögren’s. A positive lip biopsy along with bloodwork and a Shrimer’s test all provided definitive confirmation of Sjögren’s. After years of struggling, a battery of tests with many doctors and differing opinions on possible diagnoses, having a name for what I was dealing with was a relief. 

And my research began…  I read everything I could find out about this disease on the internet including blogs and medical journal articles. I borrowed and read all the books on autoimmune disease and Sjögren’s from the local library. I joined social media groups related to Sjögren’s and then thankfully I found the Sjögren’s Society of Canada.  

I became a support group leader about 6 years ago when there was an opportunity and a need in the Brantford/Paris area. After attending a National Patient Conference and a Support Group meeting (held in Burlington the previous year), I found comfort meeting others with similar issues and hearing solutions for problems that I had been dealing with alone. I finally had remedies for some everyday struggles and in return, I was able to share my tips and coping mechanisms with other members. This motivated me to learn more about how I could help others navigate through this complex disease to live healthier, happier lives despite a Sjögren’s diagnosis.   

The Brantford/Paris Support group is a friendly, caring, confidential space that allows people to share personal experiences and feelings, as well as strategies on how to manage symptoms. We discuss everything from local doctors and medications to alternative therapies, supplements and nutrition. We typically meet several times a year at the Sjögren’s Head Office in Paris. We sometimes provide samples of products for members to take home and reading materials for purchase are available there. When we don’t have a guest speaker, our meetings become an informal, roundtable type discussion with a chance for everyone to speak if they choose. Our members can feel comfortable sharing their experiences as we all learn from each other. Everyone’s perspective is valued and everyone is welcome.  Through this group, I have found that members can build relationships that provide a different kind of emotional support and understanding than they would get from family or professionals. Meeting others living with Sjögren’s can help members feel less isolated and more empowered, which has had a positive impact on our overall health.   

In my own personal struggle, I now have my parotitis under control with massage therapy, however, I’ve also become very knowledgeable on dry eye. In the last few years, I have experienced punctal plugs, then cauterization of my tear ducts, and most recently have started to use autologous plasma eye drops in addition to prescription eye drops. I certainly don’t mind sharing this information and any coping strategies I have. I find that just when you get comfortable and think you know how to handle this disease, it changes and has you searching for new relief. Because Sjögren’s is a systemic and progressive disease all the information you may hear at a support group meeting may not pertain to you today, but will be useful later.  

I feel that being a support group leader is a role that requires constant growth and education. I am passionate about helping others and I enjoy learning about and accommodating my group’s needs. I recently received CMHA Mental Health First Aid certification, where I learned about depression and anxiety. I thought this would be important, as there is a strong connection between chronic illness and mental health difficulties due to the frustrations of diagnosis, feelings of isolation and impacts of persistent pain. This course has taught me varied coping techniques that will help me to better support my group, both mentally and emotionally, through these difficulties.   

For future meetings I’m currently working on securing guest speakers and providing new information for group members on a more consistent basis. In addition to providing support, I would also like to focus on community education and advocacy and to plan social events for our members. 

In addition to being a Support Group Leader, I organize the Brantford/Paris Walk for Sjögren’s with the help of our Managing Director, Lauren Vording. This year’s 6th Annual Walk is an optional 2.5km or 5km walk, run or bike through the beautiful Lion’s Park in Paris, Ontario. Those who are not able to walk, bring a lawn chair to the event to support family and friends. It’s a great time to meet new people, enjoy the outdoors, win a raffle prize and raise awareness and funds for Sjögrens research and education. The date for this year’s Paris Walk for Sjögren’s is October 10, 2020.