Episode 1 - What is Sjögren's

Welcome to the Exploring Sjögren’s YouTube channel, hosted by the Sjögren’s Foundation! The episodes featured, start to explore the daily lives of Sjögren’s patients while also explaining Sjögren’s and what is happening in treatment and research for the disease.

These episodes were created to help increase awareness of the complexities of Sjögren’s, knowing that each patient experiences the disease uniquely. Subscribe to our channel to see more episodes as they premiere, and like our episodes to show us how much you enjoy Exploring Sjögren’s!

[BelcantoLola]

Thank you for created a series on Sjogrens! Thank you for validating our struggles. I sobbed as I watched, not from sadness just gratitude.

[debra]

I'm miserable and my family including my mother thinks it's all in my head. It's causing me depression. I just want to feel normal again. This is not easy to deal with and all the ups and downs. I have extreme dry eyes and mouth, I have metal taste in mouth, headaches and neck pain, fatigue, light sensitivity, nerve pain, now spot on my upper lobe of lung that I have to get a CT scan next week. when it flares I feel like I got hit by a truck. 😭

[breeannwalker]

My symptoms started at 14 but I wasn't diagnosed until 19. I started passing out and severe fatigue. I have very little support which makes it so much harder and the fatigue is the worst for me. I literally need to rest after just a doctor's appointment 😔

[hioyas]

1. More stories on the pre-diagnosis journey. That would be the most helpful because it is during this part of the journey that makes a significant difference in gaining perspective about how to handle set back from symptoms and lack of support from the medical community and public at large.
2. Internal organ manifestations and Sjogren. Stories focusing on the human aspects of those going through this. It is scary but it is the unknown that makes it worse.That would be the most helpful because it is during this part of the journey that makes a significant difference in gaining perspective about how to handle set back from symptoms and lack of support from the medical community and public at large.

[tomvanhoesen]

I just went through my worst flare in 27 years. I was diagnosed 15 years ago and have the full gamut Raynaud's, Fibromyalgia, RA and Neuropathy. 60 years old male initially I had no idea what was going on I got diagnosed by accident.

[mamashiraz]

A lot of doctors don’t even know about the “Early Sjogrens Panel” blood test. When anti-ro and anti-la come back negative, the doctor should do the ESP. It looks for salivary protein, carbonic anhydrase and another marker that has been found in Sjogrens patients and these markers manifest early on before ro and la.

[lilmomma]

Thank you for this series!!! Sometimes I feel so misunderstood!!!

[pamelahayes]

Thank you so much. This video explains "us" the best so far. Because our cases can't be generalized & we are each unique. Diagnosing & treatment can be mentally draining & depressing causing a physical strain on the body.

[seehearstudios]

This series of videos on Sjögren's Syndrome was very gratifying to help create! It has been wonderful and enlightening to work with Executive Producer Brad Lemack and Sjögren's Syndrome Foundation CEO Steven Taylor to create these videos to help patients and spread awareness of Sjögren's.

[shugabear]

She right about telling someone how tired you are and the person coming back with how tired they are from running errands. Not trying to undermine their situation It's hard to get people to understand that's not why I'm tired. I'm tired because I'm living in a fatigued body daily and rarely does it let up.

[karenhands]

Thanking God this is out here now and finally!! So sharing and hoping people understand what I had been saying for a few years about the overwhelming fatigue that I couldn't even explain or totally understand as well as some of the joint pain, which were all so easily ignored or explained away! Definitely sharing in hopes to spread awareness!

[marjanadidi]

Thank you, I diagnosed two months ago 😢, after two years sofer finally they diagnosed me, never heard before for this syndrome Thank you for this video 🙏

[glendatucker]

This video is great. It tells about SS affecting internal organs and is so much more than just dry eyes & mouth.

[TheBegleybunch]

I’ve been dealing with the symptoms for 9 years and have seen multiple dr’s but they all just dismiss me. Most recently I’ve become anemic, adding on to the worsening extreme fatigue, dry mouth, itchy eyes, Hemicrania Continua, and increasing joint pains. But, I’m just exaggerating 🤪

[callinlikeIseeitbs]

I went undiagnosed for 10 years! I was diagnosed last week added to my RA and fibromyalgia. They haven't mentioned the hell on your pregnancies. I've had 3 miscarriages and 1 healthy son and a healthy daughter due in in 5 weeks.

[shadytreez]

I would like to add that when you have Sjogern's dry mouth, the saliva is the begining of the digestion process and affects it. I wonder if less gastric acid is also produced in the stomach or is it more concentrated?.. I get horrible abdominal cramps and my system speeds up or slows down. It has affected my digestion. Sjogern's can cause vision loss because your eyes can become so dry and headaches... I notice too that I do not sweat like I use to. It can be 98 degrees and my body is trying to sweat, but my skin feels like I became a pin cushion... Basically, anything that is supposed to produce fluid could has issues.

[debbieguitor]

I’ve had dry eyes, dry mouth, constantly fatigue and depression, tingling or pain in my legs for years and was recently diagnosed with arthritis. I will try to find testing in my area to confirm Sjogren Syndrome so thanks so much for this video.

[keivengilham]

I was diagnosed with Sjogrens and Chronic inflammatory demylenating poly neuropathy in 2022. Lost full contol of my bodys funtions for 20 weeks and had to relearn everything

[chetan]

Thanks for such a series. Keep on doing. Please make a video about how it can affect the internal organs specifically "Liver" and how to cope up with it as my Mother is suffering from it. Thank You very much once again.

[MollyKateMcCarthy]

Super excited about the series! Thanks for spreading awareness.