Sjogren’s Syndrome is more commonly diagnosed in older adults, but has also been diagnosed in younger adults and teens. Younger patients (and patient supporters) - how have you been handling symptoms with the hustle and bustle of starting out in your adulthood? Would love to hear your experiences and tips on balancing everything, or just to have you check in for a shoutout in your community!
@waterdowner , sorry to put you on the spot, but whenever you’re free we’d love to hear more about your daughter who you mentioned in the other thread. How has handling Sjogren’s been with her university life?
Hello Julie
My name is sheila and my daughters name is kerstin.
I do not mind being put on the spot.
I have really struggled for the past year trying to find someone who has it at a young age and there is a 13 year old in Ontario about 2 hours from me.
the support groups are only with older people.
we plan on going to a conference in april. looking forward to it.
She developed very dry eye symptoms of sjogrens before going to university. June of 2018
She had really bad eye dryness, in april of that year. we were seeing opthometrsits and opthamologists to sort out what to do.
Thinks settled down with xiidra and lubricating eye drops into the summer of 2018. .
My family dr was trying to leave it up to kerstin if she wanted to see a rheumatologist.
i said to him. yes she should be referrred to rheumatologist. Stupid thing to ask a 18 year old girl.
My mother had rheumatoid arthritis and i suspected something was up.
University was stressful for me as she left home for a year.I cannot imagine how she dealt with it.
She rarely complained about it.
She drank alcohol (university life and worse as she was in engineering)which we figured out was a trigger for dryness.
Making sure she had adquate lubricating drops and prescription drops. seeing specialists during the school year.
Making sure her dry residence was humidified all the time. Dealing with all the stressors of school.
She made it into engineering 1st year so had a crazy heavy year. which i think added to her stress.
She got a single residence room, thank goodness
Terrible diet (residence food). And terrible facial acne?? weird rash that she had never experienced before in her teens. ( maybe d/t the food)
We finally saw the rheumatologist in the june of the next year 2019 and she suspected this was sjogrens.
We ares still waiting for a year to have a lip biopsy.Crazy wait times here. They are trying to find somewhere sooner to have it done…
By the spring of that first year of univeristy when she was finishing up and noticed dry mouth beginning as well.
That summer she was home and for 2nd year and has commuted to school by car. from home to university.
She is pretty stoic i have to say. Has only broken down twice.
Her diet has improved since being home. Healthier foods. Better sleep,
She uses xyylimelt biotene for mouth dryness.With each episode of stress through the year, her symnptoms have worsened
In the last exam season, finals in dec, her eyes become worse and her mouth became so dry water did not help. Had to start steroid drop and start taking pilocarpine(Salogen) prescribed by rheumatologist.
She has had to access special services at the university for exams as they will not let her in normal exams with eye drops, water bottle or mouth spray.
She is put in a separate room with other students with special issues.
Fiirst year she refused to do this, but this year, she sought out the service after realizing she could not go 2 hours without eye drops or water.
It has been a learning curve for her . With stress has come waxing and waning of symptoms but with her program being so difficult, engineering is a crazy program acedemically.
Eliminating stress is hard to do.
We are now looking into dietary modifications.
This is a lot of info.
Sorry to ramble.
I know there are a lot of other people with much worse symptoms of sjogrens, adding on perhaps lupus or RA, not sure if that will come so I am a bit worried.
she is young and i am searching for some connection.
If we could help anyone of if anyone is in a similar situation if would be great to connect.
Thanks so much
Sheila
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Hi Sheila! Not in the young age category. She really need to see the rheumatologist, and I’m hoping that she sees a good one. If the doctor says anything about her being too young for this or that diagnosis, find a new one. It happens all the time, and it’s idiotic. Clearly she’s not too young.
There are also systemic medications that can be used, that may be helpful. But she clearly needs the full autoimmune panel to be done. The lip biopsy should only be used (in my opinion) if if will significantly change the treatment course of action.