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Living With Sjögren’s

Patient Stories

Phyllis's Story

Support Group Leader Profile:
Phyllis Hirota, Manitoba Support Group

I was delighted to meet Phyllis Hirota, our Manitoba Support Group Leader, in Winnipeg when I was there for a meeting of the Patients For Patient Safety Group. Her enthusiasm for helping Sjögren’s patients is outstanding. She has a folder full of Sjögren’s stories shared by members and it’s fascinating to read them and see the similarities and differences in diagnoses and treatments. 

Her passion for supporting patients and raising awareness of Sjögren’s among medical professionals is infectious. Seeing the number of people Phyllis helps and supports takes me back to our origins. When Lee Durdon started the Society she wanted others with Sjögren’s to feel less alone with their diagnosis, and to help shorten the time to diagnosis by spreading information to doctors so that they would know more about the disease and its symptoms.

Sharing information (such as the Special Access Program for cevimeline) with such an enthusiastic representative in another province was a lot of fun. It would be great to have a cross-country Sjögren’s Tour!

Phyllis held her first Support Group Meeting on September 26, 2017 and hosted 6 members at that first meeting.  She schedules four meetings each year: two in the spring and two in the fall with one of those meetings, each season, featuring a guest speaker.  In her two plus years as leader of this group, Phyllis now has over 60 members and hosts between 7 to 20 members at each meeting.

Phyllis’ members are eager to learn at each meeting and they enjoy participating.  Some feedback from some of her members include the following comments:

  • Enjoy the new information
  • I know I’m not alone
  • Meetings are very informative
  • Much thought goes into the planning of each meeting
  • We may need more room as the number of members is growing

Phyllis is very proactive in spreading the word about her Support Group.  She makes sure that she has lots of brochures and posters at each meeting and urges all of her attendees to take as many as they can to hand out to their doctors and specialists.  She often has doctors’ offices calling for more brochures and that makes her very happy as she knows she’s getting the word out there and increasing awareness among doctors.  Phyllis has also noticed that new members are coming to the group because they were given a brochure by their doctor.

Phyllis enjoys planning her meetings and says that staying very well organized is what helps her the most.  She plans on continuing to be the Manitoba Support Group Leader for as long as she can but welcomes  help from other members. She also makes sure that each of her members receives a summary from her meeting, which she prepares after each meeting.

When a new member reaches out to Phyllis, she happily puts together a welcome package, which includes an outline of her meetings, books that are recommended by the SjSC and suggested doctors/specialists in Manitoba.  She knows that not everyone is within driving distance to the meetings (even though she has had members travel from more than 2 ½ hours away), but is eager to support everyone who reaches out to her. 

We thank Phyllis for her passion as Support Group Leader and for all the planning and organization she puts into her meetings.  If you would like to contact Phyllis for support or more information, please contact her at