Sjögrens Foundation
Sjögrens Foundation
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April Awareness Month 2024
April is Sjögren's Awareness Month.
Sjögren’s is one of the most prevalent but still lesser known autoimmune diseases, affecting an estimated four million Americans, both men and women of different ages and ethnicities. One of the difficulties with awareness is that Sjögren's isn’t a “cookie-cutter” disease and symptoms can manifest in various ways from patient to patient. Many symptoms are also referred to as invisible because you cannot see someone’s profound fatigue or when the disease has advanced to his/her internal organs.
This leads to a misunderstanding about the seriousness of the disease, which can be extremely isolating for those living with it. The Foundation wants to help close the gap between the reality of living with the disease and the perception that many non-patients may have by showing the faces of real patients, talking about how the disease affects them and how we are working together to conquer Sjögren’s.
Переглядів: 273

Відео

2024 Spring Walk Video
Переглядів 1778 місяців тому
2024 Spring Walk Video
Shannon Boxx uses her voice for Sjögren's - World Sjögren's Day 2023
Переглядів 2,1 тис.Рік тому
Shannon Boxx, three time Olympic Gold Medalist and World Cup Champion is using her voice this World Sjögren's Day to spread awareness. Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas. Today, as ...
World Sjögren's Day Teaser 2023
Переглядів 681Рік тому
World Sjögren's Day is July 23rd. To celebrate World Sjögren's Day, the Sjögren's Foundation teamed up with a special guest to give an important message. For more information click the link below: sjogrens.org/.../spread-awareness/world-sjogrens-day #WorldSjögrensDay
Tiffany Wells: Today is World Sjögren’s Day!
Переглядів 1,1 тис.2 роки тому
Tiffany Wells, Sjögren’s patient, uses her voice to support everyone living this disease and help educate others that it is serious, systemic, and prevalent. Listen to her story about being a loud and vocal advocate today and every day! If you are living with Sjögren’s, you are not alone. We encourage you to join with Tiffany and use your voice to share your story. Sjögren’s (“SHOW-grins”) is a...
Lunda Wells supports World Sjögren’s Day!
Переглядів 4732 роки тому
Lunda Wells, Tight End Coach for the Dallas Cowboys, uses his voice to support his wife Tiffany and all patients on World Sjögren’s Day! World Sjögren’s Day, July 23, was established to commemorate the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered Sjögren’s. It is meant to put a face on the millions of people living with Sjögren's or suffering from symptoms and yet ...
Use your voice this World Sjögren's Day!
Переглядів 5122 роки тому
World Sjögren’s Day, July 23, is the ideal opportunity for you to have your voice heard! In honor of World Sjögren’s Day, we encourage you to talk about Sjögren’s with the people in your life. By sharing your story and educating others, you are helping spread the message that Sjögren's is a serious disease that deserves to be recognized. You may also be helping someone who is looking for answer...
Venus Williams: This is Sjögren's
Переглядів 9 тис.2 роки тому
Venus Williams Stands Up for Sjögren's Awareness. Sjögren’s is one of the most prevalent autoimmune diseases, affecting an estimated 4 million Americans. Learn more:www.sjogrens.org
COVID-19 Vaccine: Fourth Dose Recommendations & Sjögren’s
Переглядів 2,6 тис.2 роки тому
On April 4, 2022 Janet Church, Sjögren’s Foundation CEO, and Cassandra Calabrese, DO, member of the Foundation’s COVID-19 Vaccination Committee, discussed the current recommendations for the “second booster” of the vaccine. In this video they discuss evolving COVID-19 precautions, the fourth dose vaccine recommendation, and other topics that could impact you as a Sjögren’s patient. Learn more a...
Sjögren's Foundation & Dysautonomia Joint Grant
Переглядів 2,9 тис.2 роки тому
The Sjögren's Foundation is proud to announce we have awarded the joint Sjögren’s Foundation/ Dysautonomia International grant for a Sjögren’s and POTS study to: Dr. Steve Vernino Neurology and Neurotherapeutics University of Texas Southwestern Medical Center (Dallas) The research is a continued POTS and IVIG treatment study with an added Sjögren’s cohort to study IVIG treatment for Sjögren’s a...
Watch the November 18th Town Hall: Update on COVID-19, vaccinations and Sjögren's
Переглядів 4213 роки тому
The Sjögren’s Foundation understands that many patients continue to have questions about the safety and effectiveness of the COVID-19 vaccine. With this in mind, the Foundation recently hosted a second, free, member Town Hall featuring Cassandra Calabrese, DO, and member of the Foundation’s COVID-19 Vaccination Committee to provide an update. This recording includes current information related ...
NPC 2021: What’s Next by Janet Church
Переглядів 7713 роки тому
On June 11-12, over 900 people from across the world joined our Sjögren’s Foundation virtual 2021 National Patient Conference, “Conquering Sjögren’s Together.” Listen to a Foundation update given at the Conference by Janet Church, Sjögren’s Foundation CEO. Learn more about this year's virtual Conference and view talks available for purchase on the Foundation's website: www.sjogrens.org/shop/cat...
COVID-19 Vaccine and Sjögren's Webinar
Переглядів 2,8 тис.3 роки тому
Video Date: April 2021 The Sjögren’s Foundation understands that many patients have questions about the safety and effectiveness of the COVID-19 vaccine. With this in mind, the Foundation recently hosted a free member Town Hall webinar featuring Cassandra Calabrese, DO, and member of the Foundation’s COVID-19 Vaccination Committee. This recording includes current information related to COVID-19...
Join a Virtual Walk for Sjögren's
Переглядів 4243 роки тому
Walk for Sjögren's is a national awareness and fundraising program. These family-friendly events focus on providing awareness and education of Sjögren’s within the local community while helping to raise crucial funds to support research and education. Being a virtual event, we hope that you will join us and experience a "local" Walk for Sjögren’s event that you otherwise might not have been abl...
S2: Episode 4 - Pediatric Sjögren’s Part 2
Переглядів 6993 роки тому
Pediatric Sjögren’s can create unique challenges for a family. Part 2 of Pediatric Sjögren’s, sits down with parents, a pediatric rheumatologist and a teenage with Sjögren’s to learn more about childhood Sjögren’s and creating a brighter future for all patients.
S2: Episode 3 - Pediatric Sjögren’s Part 1
Переглядів 2,1 тис.3 роки тому
S2: Episode 3 - Pediatric Sjögren’s Part 1
S2: Episode 2 - Disability and Sjögren’s
Переглядів 12 тис.3 роки тому
S2: Episode 2 - Disability and Sjögren’s
S2: Episode 1 - Fatigue and Sjögren's
Переглядів 37 тис.3 роки тому
S2: Episode 1 - Fatigue and Sjögren's
Episode 6 - Clinical Trials and Sjögren's
Переглядів 5 тис.5 років тому
Episode 6 - Clinical Trials and Sjögren's
Episode 5 - Tips For Living with Sjögren's
Переглядів 19 тис.5 років тому
Episode 5 - Tips For Living with Sjögren's
Episode 4 - Research and Sjögren’s
Переглядів 7 тис.5 років тому
Episode 4 - Research and Sjögren’s
Episode 3 - Pregnancy and Sjögren’s
Переглядів 7 тис.5 років тому
Episode 3 - Pregnancy and Sjögren’s
Episode 2 - Living With Sjögren’s
Переглядів 53 тис.5 років тому
Episode 2 - Living With Sjögren’s
Episode 1 - What is Sjögren's
Переглядів 57 тис.5 років тому
Episode 1 - What is Sjögren's

КОМЕНТАРІ

  • @Cherry01.21
    @Cherry01.21 9 днів тому

    I didn’t know having Sjögren’s could affect pregnancy. I’m 16 weeks and I just talked to my OB about it, she wants to start monitoring the heart later on, but it seems like they should start now….. I’m just trying to understand more about this so I can calm myself down.

  • @WonkyPapa
    @WonkyPapa Місяць тому

    I had a pre-existing neurological disorder before I got diagnosed with Sjogrens. I’ve dealt with pain and fatigue for years already but this fatigue is like nothing I’ve ever experienced. I hate watching television and I’m not very good at doing nothing. I do my best to take 2 - 20 minute stationary bike rides early every morning. Then I just try my best to get moving and try to as much done as I can. When I’m completely exhausted, I give in and I close my eyes for 45 minutes to an hour. Then I force myself to get moving again. Some days are better than others but I accept what life throws at me. I’d love to sit down and cry but I already know that doesn’t work. For me, attitude is everything.

  • @Jo-Aus
    @Jo-Aus Місяць тому

    Please put up on your FB site more about immunosuppressants. This has been suggested to me with extended symptoms. No one truely understands what we go through when it attacks the body.

  • @JC-qm7dn
    @JC-qm7dn 2 місяці тому

    I can’t stand the pain anymore

  • @LorenaD-w6j
    @LorenaD-w6j 3 місяці тому

    Great information, if everything goes well this should do the job. But listen, there's one factor that's usually overlooked that can considerably speed up the process, unfortunately I do not have it at hand, but it can be go’ogled Dobbie Nerkstrol's Infertility Cure, I think.

  • @paulbarnett7588
    @paulbarnett7588 3 місяці тому

    The medical and pharmaceutical community is poisoning the minds of people! " The body is mistakenly attacking it own protective system....", " the little white blood cells enter into these flued...". Lies! Lies! In an arson the firefighters risk their lives to save lives and properties but unfortunately couldn't, who should be blamed, the firefighters or the arsonist? The immune system is like the firefighters then why blaming the immune system for the uncontrollably information of the body that they didn't cause but only tried to stop ? All diseases are manually inflicted from believing and living a lie. All diseases can be healed if we stop believing lies about the immune system and take responsibility for the intoxication of our bodies. Who is the real arsonist?

  • @megtravers327
    @megtravers327 3 місяці тому

    Does sjogrens create leg instability?

  • @Nisha-kl8rl
    @Nisha-kl8rl 4 місяці тому

    Planet Ayurveda’s treatment is amazing for Sjogren’s Syndrome. I feel like I have my life back.

  • @Catherinefalk1970
    @Catherinefalk1970 4 місяці тому

    I was recently diagnosed with Sjogren’s and appreciate videos like this. Serious athlete my whole life until recently felt horrible fatigue and my legs felt like numb bricks that couldn’t move anymore. I too got the eye swab test as the first indication I had this. Please be your own best advocate with your team of doctors!!!!

  • @noemiepajares942
    @noemiepajares942 5 місяців тому

    Hello I was diagnosed with this Syndrome on my 60’s after one of many flu like symptoms this particular day Xmas time I had just returned from a trip I was sick and went to work that night my supervisor sow that I was not right she told me to get to the ER asap in theER the Dr in charge did say is a bad flu but he just couldn’t understand the lost of fluids in my body it was too much he did a lot of test specially taking blood for different things he new that I was out of the country and decided to go far with more blood test until many hours later and a #6 IV fluid to keep my body hydrated and me alert he found the problem I thank GOD for everyone who try their best to help and feel that all was good and help so many others, of course before this like I said I suffered of so many colds and coughing spells chocking easily allergies and going to so many Drs its been a long journey for me now I know what I have and I am taking care of me I am 70 years old married two beautiful kids and my sweetest granddaughter GOD thank you there are great human beings out there and I prayed for all THANK YOU for making a difference, yes I have RA Rheumatoid Arthritis my lungs are compromised my kidneys and bladder and I am happy to be alive

  • @JustSayin916
    @JustSayin916 5 місяців тому

    When I say I'm "fatigued," I mean I feel like someone dropped a safe on my head. I am spent, wiped out, flattened. It's a whole different thing than "not getting enough sleep."😒

  • @Stampingerms
    @Stampingerms 5 місяців тому

    Is swelling and pain in feet connected to sjogrens ! My blood test are negative for everything else… just thinking… my GP doesn’t know what us causing it!!

  • @MsZoombye
    @MsZoombye 6 місяців тому

    Unrelenting discomfort, fatigue and pain. I might have a good day here n there, but mostly it's pretty bad! Even if I'm doing all the right things I can feel terrible.

  • @sherry450
    @sherry450 6 місяців тому

    Exercise ?? Sounds great BUT then the joint, bone and muscle paint kick in! 😑

  • @YanaSalchak
    @YanaSalchak 7 місяців тому

    How to become part of the foundation ?

  • @sylviaoesterwinter8858
    @sylviaoesterwinter8858 7 місяців тому

    Wish I'd known this in April

  • @sixthview
    @sixthview 7 місяців тому

    I feel as though this would have been more beneficial in April? Maybe?

  • @PrettyEyesz
    @PrettyEyesz 7 місяців тому

    I was diagnosed with Sjogren's Syndrome by my rheumatologist at age 35 in August of 2023. But its no telling how long I've had the disease and was unaware. I currently take daily eyedrops for my dry eyes, and Hydroxychloroquine for overall symptoms and recently I was diagnosed with Inflammatory arthritis in relation to my Sjogren's and I take a steriod methyalprednisone for my arthritis pain. Its been a crazy year dealing with this new illness and having issues like immediate memory loss often, chronic fatigue that never goes away no matter how much rest and sleep I get, the dry eyes can be very irritating and sometimes painful when they become dry, red and irritated. And lastly I don’t well in heat, I passed out multiple times last summer in weather that wasn't that hot at all. This disease has also affected my mobility. I went and purchased a cane, then a rollator walker, because when my knees are hurting because of my Inflammatory arthritis, or I am extremely weak from the fatigue I have to use my mobility aid to help me walk. Never thought I would ever be using a walker in my mid thirties but yet here I am. And worst of all I can no longer work because I'm too sick. I hope in the future to get disability income, but this last year I waited almost two years, had a hearing with a judge and still was flat out denied. I really don't know what to do for income at this point. I just hope I don't end up homeless because of this illness. Its not like the US government gives a care about the disabled anyway. But yeah its been a rough year for me dealing with this disease. Sorry my comment was so long, blunt and unhappy...

  • @PrettyEyesz
    @PrettyEyesz 7 місяців тому

    🩵🩵🩵🩵

  • @carolynjohns3958
    @carolynjohns3958 7 місяців тому

    Abusive work place is deadly for autoimmune fatique.

  • @birsenhayrullahoglu9661
    @birsenhayrullahoglu9661 7 місяців тому

    Sizi anlayabilmem içinde Türkçe alt yazı lütfen ,teşekkürler.

  • @keivengilham6900
    @keivengilham6900 7 місяців тому

    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

  • @fam.h.a.siereveld9794
    @fam.h.a.siereveld9794 8 місяців тому

    Fatigue is not visuele so People and even doctors do not understand it well also because of the dryness mouth, lips ,throat skin. I have sleepingdisorders from these but also from pain. Dvn and so on also my eyes with Macula

  • @fam.h.a.siereveld9794
    @fam.h.a.siereveld9794 8 місяців тому

    I am living in the Netherlands having Sjogren's disease a very long time. I also have Pots symptomps and dysautonomia but what can you do to it? Our Sjogren's foundation are not so informeren as well as in the USA. Thanx a lot of this informations

  • @aliceabranteserney2984
    @aliceabranteserney2984 8 місяців тому

    It’s. Terrible disease so painful and there’s nothing they can do or don’t want to do you must help yourself because these doctors don’t know what to do

  • @d.o.r.kzerrato9193
    @d.o.r.kzerrato9193 8 місяців тому

    30 yo with sjogrens here. How donyou deal with the pain!

  • @lauraholden2616
    @lauraholden2616 8 місяців тому

  • @kristinecampbell5585
    @kristinecampbell5585 8 місяців тому

    Word salad for " we have no idea, but we need your money to offer no help."

  • @janmartell9792
    @janmartell9792 8 місяців тому

    I have no good days. Oh, I had two good days last year.

  • @DeadFinally666
    @DeadFinally666 8 місяців тому

    Try 32 years 😢. Took over 10 years to diagnose. When women reach the level of Sjgrorens, I live with, you 💯will think of death being a relief. My opinion only. Good night, folks. 😢 P.S. SEE the edit? Blindness will be a relief 😌

  • @janmartell9792
    @janmartell9792 9 місяців тому

    Yes, these vaccine can hurt you. So many people have been harmed by them, people I know.

  • @janmartell9792
    @janmartell9792 9 місяців тому

    Drs need to think out of the box.

  • @BerniBernsify
    @BerniBernsify 9 місяців тому

    That guy obviously had no idea what real severe fatigue is 🙄 it's not oh I'm tired fatigue, it's a you wake up with zero energy, do not get energy from caffeine, do jot get any energy or fuel from eating food. It's complete severe exhaustion with no energy from any source. It's like putting gas in a car, a new battery and new parts and the car still won't run at all. No one knows why. Exercise 🤣😂🤣😂 wow he's clueless!! It doesn't work. He needs to experience Sjogren's himself.

  • @florabraswell-nm1re
    @florabraswell-nm1re 11 місяців тому

    It’s unreal to have the fatigue, neuropathy pain , that’s also extremely painful in my fingers , l often ask God how can a human being feel so bad and still be living, he says l am carrying you through this time and l will never forsake you Thank You Jesus 🙏🙏🙏l am not alone , l can do a little today , and l hope that tomorrow l can get my doctor to help me, with all this pain not everyone are dope addicts l am 76 years old how many days do l have on this earth ? Doctors need to understand their patients more , Dear Jesus Christ please help Doctors to help the people that are elderly especially, who are not looking to get high , but just wanting some relief from their chronic pain ( more education on Sjögrens and other devastating autoimmune disorders, information on autonomic disorders “ peripheral neuropathy they need to realize that most illnesses derived from the Central Nervous System 🙏🇺🇸🙏

  • @saphire7693
    @saphire7693 Рік тому

    Exercise????

  • @gameoftomes14
    @gameoftomes14 Рік тому

    For 14 years before my diagnosis of Sjögren’s, I thought I was just weak, that I couldn’t handle everyday pain or common illnesses. So I felt validated. But it also helped me paradoxically to see that oh thank goodness this isn’t how everybody feels.

  • @noneofurbusiness5223
    @noneofurbusiness5223 Рік тому

    I took plaquinal (sp?) for 11 mos for sub-acute Lupus. Last month of treatment I got mildly nauseated. Luckily sub-acute Lupus went away.

  • @piratescoron
    @piratescoron Рік тому

    Fatigue conjures up a message of tierdness, with myself . Thats not a correct description, its total exhaustion to point where it like your body has just had its enery switch flicked off.

  • @desiree3488
    @desiree3488 Рік тому

    I don’t qualify because my husband make just over to much even though I worked my whole life. If my husband passes the I would be better to get his normal SSA

  • @simhifree2416
    @simhifree2416 Рік тому

    Exhaustion x 3. Add RA and Hashimotos 😢

  • @EnvironmentalCoffeehouse
    @EnvironmentalCoffeehouse Рік тому

    I am a gardener. I have a seven bed garden, I grow vegetables I can them I cook, I do a lot. I also have a really disabled spine. I push myself. The only meds are three opiates a day. If I didn't have that, I would not be able to do the things I do. Right now I'm going through a flare and I have been diagnosed with Sjogren's for about 20 years now. I'm 64.

    • @kristineanderson4983
      @kristineanderson4983 Рік тому

      You're lucky to have pain meds. Most can't get them anymore. Because they took mine away, I stopped being able to exercise and function properly. Now I'm in an electric wheelchair which would could have been avoided! My back and legs are so damaged they will never improve according to doctors. This is the fault of the CDC and DEA.

  • @azalea1404
    @azalea1404 Рік тому

    Thank you so much, Venus, for your uplifting words. I too suffer from a debilitating autoimmune disease (myalgic encephalomyelitis) that keeps me bed bound for most of the time. I used to play tennis, but can't anymore. I have always loved watching you and your sister on the court. You are both such major inspirations - but particularly you in terms of how you manage your disease. Many greetings from Copenhagen, Denmark ❤🙏❤

  • @janefigueroa1731
    @janefigueroa1731 Рік тому

    Do u think pneumonia shot is benifical to a 71 year old who has sjrogrens and take hydroxychloroquine-

  • @janefigueroa1731
    @janefigueroa1731 Рік тому

    Laying on back in bed ,sorry my phone tupes what it feeld like sometimes

  • @janefigueroa1731
    @janefigueroa1731 Рік тому

    I was lauing in bed on back watching t.v. eaiting to drift off to sleep and the whole room started spinning it lasted about 2 minutes

    • @noemiepajares942
      @noemiepajares942 5 місяців тому

      Liquids water is so important have it at hand sip and sip remember our body needs fluids to keep on going blessings

  • @janefigueroa1731
    @janefigueroa1731 Рік тому

    Has anyone experienced dizzy spells from Sjrogrens.

    • @noemiepajares942
      @noemiepajares942 5 місяців тому

      Yes and is good to keep checking your ears tell your Dr and be careful blessings

  • @lindah8838
    @lindah8838 Рік тому

    Thank you for all that you do in bridging the gap in getting very useful and relatable information for those of us with Sjogren's. What a wonderful resource!

  • @alst5
    @alst5 Рік тому

    So, basically, everything except veggies 😢 It is hard to find a diet that works. I also hace Celiac Disease so I find it hard to find accesible food if it is not cooked at home

  • @citlalie9791
    @citlalie9791 Рік тому

    Exercise you people are crazy

  • @lindah8838
    @lindah8838 Рік тому

    Swimming slowly helps me a lot, partly due to the actual exercise but also having conversations with others.