Marilyn Mulldoon is the founder of the new Osoyoos Autoimmune Support Group, which will be holding its first ever meeting at the Osoyoos Health Centre on 89th Street on Tuesday, Jan. 10. Members will meet every second Tuesday of the month at the health centre. (Keith Lacey photo)
An Osoyoos woman who has battled an under-recognized disease that affects one in 70 Canadians is looking to start a support group for all local residents – and their loved ones – who suffer from various autoimmune diseases.
Marilyn Mulldoon was diagnosed with Sjogren’s Syndrome more than 30 years ago and has been battling the many side effects that come with this illness ever since.
Common symptoms with Sjogren’s Syndrome include exceptionally dry eyes and dry mouth, skin disorders, live abnormalities and a small percentage develop pancreatitis, said Mulldoon.
Many suffer from neurological problems, including impaired memory and the illness is often complicated by recurrent upper respiratory infections and less frequently by obstructive lung disease.
Rheumatoid arthritis (RA) is the most common type of autoimmune arthritis, but many would be shocked to discover more than two million Americans suffer from Sjogren’s Syndrome and one in 70 Canadians – or up to 430,000 people – suffers from this disease, said Mulldoon.
“Nine out of 10 patients are women between the ages of 35 to 65 years of age, but children can also suffer from Sjogren’s,” she said. “Sjogren’s can occur alone or as a complication in rheumatoid arthritis, lupus, scleroderma or other connective tissue diseases.”
Sjogren’s Syndrome can often be very difficult to diagnose due to the complexities of the disease and diversity of symptoms and patients frequently have no obvious clinical findings, she said.
“It can often take several years to finally get the correct diagnosis … it stumps a lot of wonderful doctors,” she said.
Depending on symptoms, an undiagnosed person may seek treatment from different specialists who will treat each symptom individually, said Mulldoon.
The invisibility of the disease is expected to add to the delay in diagnosis and is, unfortunately, often not taken seriously by health professionals in many cases, she said.
“A general lack of awareness about this complicated disease may also add to the delay of the diagnosis,” she said. “In my case, I knew there was something seriously wrong with my body, but doctors couldn’t find out what was wrong.
“It took several years for them to finally confirm my diagnosis with Sjogren’s.”
Sjogren’s is a very serious condition so it is important for patients to be monitored closely for possible complications or the development or a related autoimmune phenomena and lymphoma, she said.
“Sjogren’s itself is not considered fatal … but it almost always leads to other serious health complications that can seriously negatively effect your health and in many cases lead to very serious consequences, including death,” she said. “I can tell you from personal experience that this illness knocks the hell out of you.”
Because Osoyoos does have a lot of senior citizens, Mulldoon said she has been thinking about starting a support group for some time and has spent the past couple of months putting everything in place.
She is proud to announce the formation of the Osoyoos Autoimmune Support Group, which will begin meeting once a month starting next week at the Osoyoos Health Centre on 89th Street.
The first meeting will be held at 9:30 a.m. on Tuesday, Jan. 10 and meetings will be held between 9:30 a.m. and noon every second Tuesday of the month at the same location.
Management at the Osoyoos Health Centre has generously donated a meeting room to hold the meetings and she can’t thank them enough for their support, said Mulldoon.
Mulldoon is confident this support group will become very popular in a hurry.
“This is a small town and I really didn’t think a standalone support group with those diagnosed with Sjogren’s Syndrome like myself could work, so I decided to embrace everyone who is struggling to deal with complications from all autoimmune diseases,” she said. “Everyone is welcome if they are suffering from any kind of autoimmune illness … and I know there are many living in this community.”
Some of the more recognized autoimmune diseases besides rheumatoid arthritis, include lupus, gout, scleroderma, diabetes, Epstein-Barr and Multiple Sclerosis.
“There is a very long list of autoimmune illnesses,” she said. “This support group will welcome any and all.”
Like most support groups, the Osoyoos Autoimmune Support Group will provide an opportunity for people going through similar circumstances to tell their stories, share information and receive support and encouragement at the same time, said Mulldoon.
“My main goal is for people to be heard,” she said. “A lot of people suffering from these illnesses do so alone or within their own family.
“I want to provide an avenue for a group of people sharing the same experiences to tell their stories, explain what they’re going through and how their lives have changed since being diagnosed and hopefully receive encouragement and know they’re not the only ones going through this battle.”
She also hopes that friendships will be formed through the group, said Mulldoon.
Mulldoon has also spread the word about the new support group in Oliver and hopes to have many residents from that community attend the monthly meetings.
Anyone seeking more information about Sjogren’s Syndrome can visit the website at www.sjogrenscanada.org.
Anyone wanting more information about the new support group in Osoyoos can send an email to Mulldoon at [email protected].
She can also be reached on her cellphone at 250-495-0666.
KEITH LACEY
Osoyoos Times
