Episode 4 - Research and Sjögren’s

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  • เผยแพร่เมื่อ 17 ต.ค. 2024

ความคิดเห็น • 13

  • @arethaball3593
    @arethaball3593 5 ปีที่แล้ว +9

    The problem is Rheumatologist not staying involved with research. If my lymph nodes aren’t swollen I get no attention.

    • @cindyjones9512
      @cindyjones9512 5 ปีที่แล้ว +5

      Every Rheumatologist should have to watch these videos.

  • @Karelja
    @Karelja 5 ปีที่แล้ว +5

    Indeed genetic biomarkers would trigger an incredible inflow of knowledge that ultimately would direct to the right drugs and the right clinical approaches. As it is currently, it is like Sjogren's is an Olympic team managed by different sports' coaches... and that works more as a decoy than a successful monitoring.

  • @grod0051
    @grod0051 5 ปีที่แล้ว +2

    Hello, I have sjogrens and not 1 doctor of mine seems to know what to do with me. I've been told there's nothing more they can do for me. I would like to contact Kimberly-Jasmer at the University of Missouri. I can't seem to find any contact info. Can you help me please? I just found this and have learned so much just from these videos!!! I'm so grateful that I'm not alone in this as I thought I was.

    • @marjoriebarnes2208
      @marjoriebarnes2208 4 ปีที่แล้ว +2

      Christine Davis I agree, doctors know so little about SJOGRENS. It’s not all about dry eyes. I have had S.s for many years, fatigue, pain in joints and muscles, digestive and bowel issues, it’s not fun. Not much help out there. Have been avoiding the toxic drugs so far.

  • @draganabuha3928
    @draganabuha3928 2 ปีที่แล้ว

    I love my doctor, she is a pioneer in Serbia. Olivera Stankovic . I am thankful for her.

  • @florabraswell8423
    @florabraswell8423 2 ปีที่แล้ว +2

    I been sick over 20 years , diagnosed with fibromyalgia chronic fatigue, Rheumatologist never ran any blood work or test of any kind while l am going downhill dragon myself out of bed for over the past 20 years flu like symptoms dry eyes dry mouth fogging brain hearing loss eye loss now they will say it’s old age , l can’t hardly see l have numbness tingling pain in my fingers , and different areas of my body , l stopped going to doctors because l am too sick to go , while years ago l would force myself up to go , l give up become they either dont care or something is not right with these people, now l am stuck at home basically asking God to handle it . 🙏🙏🙏

  • @norav.valenzuelac.8148
    @norav.valenzuelac.8148 4 ปีที่แล้ว +3

    It’s terrible how you go in to see a rheumatologist and if they see the word fibromyalgia somewhere in your medical file it seems like the whole Sjogrens diagnosis symptoms you’re having and everything else doesn’t matter to them because another dr said you had fibromyalgia so they looke at you and say yeah you’ll be ok fibromyalgia is not Sjögrens they even try to refer you to counseling so that you know that fibromyalgia is not real pain. I feel frustrated with a lot of these Rheumatologist that sometimes I wish they had this syndrome and only then they would understand

  • @mamashiraz
    @mamashiraz 4 ปีที่แล้ว

    Early Sjogrens Panel- salivary protein, carbonic anhydrase etc Thankful this was developed! My doc used it to find my SS. He also discovered I have Antiphospholipid Syndrome too.

  • @myrnarod9299
    @myrnarod9299 5 ปีที่แล้ว

    I would like if it is possible Spanish translations. thank you

    • @norav.valenzuelac.8148
      @norav.valenzuelac.8148 4 ปีที่แล้ว

      Sahara Qussar there is no need for the rude response. We are all here trying to find information about this syndrome. If anything you’re not the one she is specifically asking to translate the info that is being provided to the public. Maybe the person that did this video and is responsible for uploading is the one who should respond to her and NOT you. Any how there are people that make a living working as interpreters and translators just so you know. My name is Nora and i am a professional Interpreter in English and Spanish.

  • @LR-yu3mx
    @LR-yu3mx ปีที่แล้ว

    I know Iinherited thisdisease from my dad. He was photosensitive, and I remember thathe had symptoms. Actually I believe it is lupus with Sjogrens.

    • @LR-yu3mx
      @LR-yu3mx ปีที่แล้ว

      My dad's went undiagnosed and untreated
      He had a few strokes and his last years he was not mentally well, although he was a brilliant man with a doktors dekreet in education and mathematics