Innovative New Diagnostic Test for Sjögren’s Syndrome - 2022 WARF Innovation Awards Nominee

[@dakatajv]

Thank you for doing this research! Please keep us, the public posted with the progress and how this test can become available.

[@kellyknight6551]

This is great news for those that are seronegative. I am not only seronegative, but even my painful lip biopsy was negative. It took surgery for Parotid gland biopsy to finally get my diagnosis.

[@Von199X]

I don't get it, you get a biopsy just to confirm you have it but there's no cure?

[@kellyknight6551]

@@Von199X No cure, but a diagnosis leads to treatment of symptoms. And for those that have systemic, disabling disease, it can be used to determine eligibility for SSDI or private disability benefits.

[@toryberch]

It also gives a peace of mind and puts that diagnosis and the struggle of what is wrong with me to rest! It took that lip biopsy ( which hurts like the devil for a few days) but worth it as it put me on the right med of Plaquenil to relieve my pain

[@jedheart8059]

Same here, seronegative and lip biopsy negative.

[@playhooky]

@kellyknight6551 So how painful or difficult was having the Parotid gland biopsy surgery? And how long was the recovery & any difficulties or challenges with that?

[@stormaurora5536]

I've had Sjogrens for 10 years despite negative bloods, I was offered the biopsy but didn't want to go through it so I refused. My symptoms have got much worse over the past 5 years but I have never had any treatment and don't even have a doctor to monitor my condition as they believe that if you don't have an official diagnosis, you don't have the disease. Thank you for your work.

[@kristineanderson4983]

Yep, we need some doctors who can start listening to patients! The longer we go untreated, the harder it gets to function. Insurance companies have to get on board too. That may be why the docs are so shy.

[@CommanderBabe]

Same exact situation here

[@user-hi8rg7bl2s]

Thank you for diligent research to understand anything about Sjogren's further. Sincerely.

[@umasobservations]

The overlay of the music over the speech in your video is so overwhelmingly distracting that it makes it difficult to follow what you're saying. 😢

[@julesonthebeach777]

I agree. I hope they can either lower the volume of the music or remove it altogether.

[@tinak.3022]

Yes, I agree with you. The music is loud and distracting. I am happy to find out that they have come up with an alternative test to diagnose SS. I will share this video with my rheumatologist.

[@Iwoasasaned]

Totally agree, it’s nearly unbearable!

[@j.ksmith7432]

@@julesonthebeach777 use the subtitles!

[@j.ksmith7432]

Use the transcript or the subtitles, then you can mute the music

[@reason5591]

Glad to find this as my Sjogrens disease chugs along. Im on hydrocchloroquine since 2012 that i believe ive grown immune to its benefits. My diagnosis took most of my life at 52 yrs old to get a diagnosis. Ive actually had it since age 11 and im now 63

[@vampireforever6937]

Is hydrochloroquine was effective ... do you recommend this to me like fellow patients ...atleast whether it will help with fatigue and brain fog ... hope a review answer of the medicine that you took for a decade , including the side effects of the medicine ...

[@TheBlingthing70sp]

In my last lab paperwork I saw something I had never seen before…Sjogrens I couldn’t believe it. I don’t know if it’s being used already but it was in my lab report. I’ve had Lupus for 26 years and RA so I really keep on eye on my blood work. Thank you for all the hard work !

[@evabrechtel4321]

I've been waiting for almost a month to get the results of the blood work that my immunologist ordered.

[@nmailly44]

Thank you very much !! My SSA are higher than rate but biopsie is negative but I have a sialadenite .... and I have a lot of symptom of sjogren. I have discoid lupus but not activate. I have also Hashimoto. So what should I do to be sure if I have or not Sjogren??? The medical system should assign one doctor who will be in the middle to analyse and put everything together ,work with others specialists....😤😢 Everybody works separately and the process is long to see a specialist. I'm exhausted ...the system is not helping !

[@catherinealexandrian9927]

I was diagnosed through lip biopsy, and it was painful. I treat my symptoms but not on any specific meds for autoimmune, However, I do have graves also.

[@mamashiraz]

That’s strange! Why aren’t doctors providing you treatment??

[@vampireforever6937]

Why painful ? No anaesthesia?

[@lillyoliver2056]

I believe it’s just topical but I might be wrong.

[@lynettesmithdorf]

Thank you for your interesting research. I had a lip biopsy done 11 months ago at Groote Schuur Hospital and I am devastated as the doctor damaged my nerve and as a result have lost sensation in half of my lower lip. The results came back that I don't have sjogrens syndrome even though I'm suffering with debilitating dry eyes and mouth, (for nearly 40 years) colon and gut issues. I suffer with meibomian gland dysfunction and macular degeneration. I'm one very frustrated person as my severe dry eyes has really affected the quality of my life for so long. So by having the lip biopsy and the permanent damage it's caused is just an insult to injury that I have to endure besides my other health issues. Kind regards, Lynette Smithdorf

[@ursulabean3179]

Why the music…… a darn nuisance

[@mamashiraz]

Some people with SS are negative for Ro and La. The University of Buffalo developed the Early Sjogrens Panel to detect salivary antibodies as well as anti carbonic anhydrase and anti parotid antibodies. These results put the “seronegative” theory to rest. It’s very useful when a doc can make a clinical diagnosis but Ro and La are negative. This test helps speed up confirmation so patients can receive treatment. What exactly is your test looking for? What autoantibodies?

[@ehjohn027]

My Rheumatologist used the early sjogrens panel because I never would test positive for Ro and La. The positive ANA, Early Sjogrens Panel and decades long of symptoms 😢 finally gave me my diagnosis.

[@mamashiraz]

@@ehjohn027 Did they find any other autoimmune disorders? My rheum recently said that seronegative Sjogrens is oftentimes secondary or comorbid to other AI disorders like RA and lupus. I also have Antiphospholipid syndrome which was found incidental to the others.

[@thebagelchief1140]

As an American, living abroad in Latin America, I was diagnosed using a salivary gland scintigraphy. I'm very curious as to why this isn't standard practice as it seems pretty straightforward, non-invasive and cheap.

[@manariitane5167]

It is somewhat invasive if you consider the radioactive materials that are used.

[@SaintTrinianz]

How do I get this new, improved test? Do I have to go to WI?

[@torilewitt8511]

Thank you for this important research.

[@cbordes1]

This is wonderful news. Sufferers need this test so badly. Do you have any idea when it will be available?

[@wisconsinalumniresearchfou8522]

Research on this diagnostic test is still ongoing. WARF is currently looking for companies willing to partner with us to develop the test for the market and/or funders to support further research and development. While we do not currently have an exact timeframe, we’re hopeful such partnerships will speed development to respond to patient needs.

[@cbordes1]

@@wisconsinalumniresearchfou8522 it’s my hope that you get funding soon because there are so many people who need a definitive diagnosis.

[@TheresePope]

While I am a seropositive Sjogren's patient, there are SO many patients who are refused treatments by clinicians because they are seronegative and/or lip biopsy is negative yet they are incredibly sick and are blown off as just "sicca syndrome." This test really needs to happen sooner rather than later. It is my hope that you get funding asap. Thank you for all your help and dedication to Sjogren's research. 👍👍

[@papa.mike01]

Please send me information on how to apply to get your test.I’ve been suffering badly and am sero negative. I have blood test anomalies all over from many types of blood tests.

[@wisconsinalumniresearchfou8522]

Research on this diagnostic test is still ongoing, and the test is not available yet. WARF is currently looking for companies willing to partner with us to develop the test for the market and/or funders to support the further research and development. While we do not currently have an exact timeframe, we’re hopeful such partnerships will speed development to respond to patient needs.

[@sheri023]

Have you heard of the ATG 5 protein test in Sjogren's patients who have dry eyes? It's said they will have higher than normal of that protein in their tears. Do you know if this non-invasive test is part of the diagnosis now? I have heard very little about it since it came out a few years ago.

[@bethlovesdogs]

Music is crazy loud & distracting

[@j.ksmith7432]

Use the subtitles or the transcript, mute the sound

[@laurar8486]

Is this test available now?? I'm scheduled for a lip bx on 12/20 and would love to cancel it!!

[@wisconsinalumniresearchfou8522]

No, it's not on the market yet.

[@aussiemom2350]

How does one get access to this test?

[@tishajacquet47]

See a immunologist/ rheumatologist

[@ritahall2378]

I had lip biopsy and gland was missing or dried up so I have all symptoms but no Dx - Rheumatologist

[@claudiaaleixo9899]

Is the test available on NHS UK?

[@susanbrown2578]

My blood test didnt show it, so i was gaslit. Unreal.

[@candycee62]

I had the same experience. The rheumatologist was so dismissive of my symptoms and told me not to come back

[@susanbrown2578]

@@candycee62 wow! 🤬

[@joycehazeltine7016]

I had two different male rheumatologists dismiss my Sjogrens after I was already diagnosed at the NIH

[@johnf6267]

Look up Brent Goodman MD Mayo. Send his presentation to those docs with a card that says , " you are fired you arrogant ass".

[@superplannergirl]

This happened to me on multiple levels and occasions over the last three plus years. I decided to call the last rheumatologist in my area that I had not seen yet and they miraculously took me as a self referred patient and the doc believes I have sjogrens. I know you shouldn’t have to fight so hard for yourself and for treatment but please keep advocating!

[@jedheart8059]

My inner lip still has pain from my lip biopsy that was about 7 years ago at the VA ENT.

[@julieshenk7640]

Mine is still partially numb after years. Sadly, not enough samples were taken! Non-conclusive but said could repeat. Ugh

[@gaiaspirit5313]

If you need someone to DX, I would love to help, to help myself. I won't go through my experience to find out what my extreme pain means and how no one seems to care enough to dig deeper after their first initial testing. Meanwhile, I live day to day with a pain scale from a 9/10 depending on what I have done throughout the day. I'm starting to lay down more and more because my body can't stand to be sitting or standing up at a certain point of my pain. I live in Dearborn MI, if you can help me to get there and pay for expenses to go through this, please choose me as one of your patients.

[@stunnedmullet]

Years ago, I presented to an ent specialist with pretty much all the symptoms of sjogrens, which is what he thought I had. They did a lip biopsy which left a permanent bumpy scar on my inner lip. I was then told that it wasn't sjogrens because I didn't have the rheumatoid marker. I still have all the symptoms but have just been left to deal with them all. Is it possible it was sjogrens all along?

[@janclebro6997]

I would be very interested to know whether your test would show up Sjögrens in patients who have managed to get their symptoms under control through diet etc. Or would it only show positive in people whose symptoms are active?

[@draikystories]

I have dry eyes and is seronegative. I do not want to do a lip biopsy either. My doctor still thinks I have Sjögren’s Syndrome even through I dun think I have dry lips. However, I have been drinking plenty of water and applying lip balm every night. I hope this new diagnostic will come to Singapore soon so that at least I get an answer.

[@Veronica-ho1pl]

What if you are getting ivig? This could alter results?

[@MiracleFound]

I was lucky in testing positive for SSA/Ro, and a parotid gland biopsy was also consistent with Sjögren's. I can't put together enough saliva to do a DNA test. If you touch the inside of my mouth it is completely dry. Nothing that I have tried makes a difference in that dryness.

[@shericontrary2535]

background music not necessary

[@WVgrl59]

But when you have a dry mouth it takes longer to heal so sore or a cut in your mouth is very scary

[@rebeccajohnson629]

I get sore spots similar to ulcers

[@Iwoasasaned]

Please, please stop adding „background“ music to this kind of content. In this kind the music is even louder than the spoken content so it’s not only distracting but just dominant. And just as colored backgrounds I.e. in Facebook are not readable for blind/visually impaired people this kind of music is as non inclusive for otherwise impaired people like me as an autistic or like folks with adhd and so many more.

[@j.ksmith7432]

Use the subtitles or the transcript, mute the sound

[@marie.theartist]

I hope they can develop a cure for this

[@deniseitzkowitz8436]

Is this the same test as early Sjogrens panel?

[@warfhistorian137]

Hi Denise, at the 4:44 minute mark, Dr. McCoy refers to "something called a Sjo panel." I believe she's referring to the panel you have in mind. This technology is a different, newer panel still in development.

[@wisconsinalumniresearchfou8522]

No, this is an improved test.

[@MCJOHNSON95]

@@wisconsinalumniresearchfou8522 Hi I have Sjogrens syndrome. If you need to do any panels or experimental techniques I'm your man.

[@justinsperanza3673]

@@MCJOHNSON95 Hi Craig, I am currently being treated for Sjogren's but have not had a formal diagnosis. The rheumy assumes Sjogrens based on an ANA of 1:2560, Low C3 complement levels, and symptoms. I have a lot of nerve and muscle pain and wonder if you get the same? I don't know any other men with the disease.

[@mamashiraz]

@@justinsperanza3673 Have you had a dsDNA test?

[@cindiet6827]

I would love to know more about this. I just had to have all my top teeth pulled out.

[@paulaflatt2936]

I would like to get info on this test because I have seonegative tests but symptoms but would like to get this diagnosis off my medical record if I don’t have it.

[@wisconsinalumniresearchfou8522]

Research on this diagnostic test is still ongoing, and the test is not available yet. WARF is currently looking for companies willing to partner with us to develop the test for the market and/or funders to support the further research and development. While we do not currently have an exact timeframe, we’re hopeful such partnerships will speed development to respond to patient needs.

[@rebeccajohnson629]

They decided to do lupus test due to weird symptoms now the pcp said it was neg ,so im gaslight too

[@jilljones4566]

Drop the music. I think it should be pronounced "SHER-GRENS

[@cindiet6827]

I really wish you were close to me.

[@marypimpinella8213]

The lip biopsy is torture….. Don’t do it…

[@1corinthians-138]

WHY, don't they numb it first?

[@fionabattrum7395]

It was an absolute breeze at Guys hospital in London with minimal healing time after . At worst it felt like a small ulcer for a couple of days still fine to eat ! If it hurts it was probably done by a butcher 😮

[@fionabattrum7395]

The lip biopsy was nothing in the scale of human suffering . I guess it depends on the skill of the person taking the biopsy. Whatever test is used reliability should be the most important. A positive lip biopsy resulted in my parotid glands being scanned where a suspicious lesion was discovered that is now regularly scanned due to risk of conversion to malt lymphoma in Sjogrens patients. This led to

[@Call-me-Al]

As any surgery wound, sometimes it heals wrong. You could have the best surgeon and the person's body just reacts badly. For instance keloid scarring growing and growing, and other issues. So the fewer who have to get surgery the better.

[@fionabattrum7395]

@@Call-me-Al I would prefer to have a definitive diagnosis and considered the biggest risk to be nerve damage not pain or wound healing within my mouth. The biopsy ensures a definite diagnosis and with the correct diagnosis the best treatment can be planned.

[@maquisbg]

7 years? 20 years to get a diagnosis. In USA they didn't know the more. Than obviously diagnostic.

[@marypimpinella8213]

I have all the symptoms…. W no test that proves I have it 😳

[@LindaDavis-iq9zj]

I believe people suffering with this are hypersensitive to distractions such as music, vibrant colors, speech that is too rapid and hard to process due to the speed of speech. It was too much and I discontinued watching, unfortunate.

[@ursulabean3179]

I refuse a lip biopsy… it’s invasive…. There’s a blood test now…..

[@quake2u]

Thats great but if it's positive there's not much they can do. You're back to try this drug that doesn't work.

[@dw7939]

Rituxan has really helped me with my Sjogren's neuro symptoms. Plasmapheresis completely got rid of all my symptoms, it was insane. I'm seronegative with novality antibodies.

[@rebeccajohnson629]

Anyones lips peel really bad