National Scleroderma Foundation
National Scleroderma Foundation
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Laryn - EveryJourneyMatters
Laryn shares her journey with scleroderma during Scleroderma Awareness Month.
Переглядів: 112

Відео

Landry - EveryJourneyMatters
Переглядів 7014 днів тому
Hear about Landry's journey with scleroderma during Scleroderma Awareness Month.
Falguni - EveryJourneyMatters
Переглядів 8614 днів тому
Falguni shares her journey with scleroderma during Scleroderma Awareness Month.
Donna - EveryJourneyMatters
Переглядів 8114 днів тому
Donna shares her journey with scleroderma during Scleroderma Awareness Month.
Chanel - EveryJourneyMatters
Переглядів 8814 днів тому
Chanel shares her journey with scleroderma during Scleroderma Awareness Month.
Cindy - EveryJourneyMatters
Переглядів 6814 днів тому
Cindy shares her journey with scleroderma during Scleroderma Awareness Month.
Cheryl - EveryJourneyMatters
Переглядів 6214 днів тому
Cheryl shares her journey with scleroderma during Scleroderma Awareness Month.
Barbara - EveryJourneyMatters
Переглядів 8314 днів тому
Barbara shares her journey with scleroderma during Scleroderma Awareness Month.
Amanda - EveryJourneyMatters
Переглядів 4614 днів тому
Amanda shares her journey with scleroderma during Scleroderma Awareness Month.
#TealTalk June 27, 2024: #TealTalk for Self-Care: A Toolkit
Переглядів 17621 день тому
In this session, we will discuss self-care tools and tips for people living with scleroderma. We will also discuss the benefits of pet therapy for people living with a chronic disease.
#TealTalk June 20, 2024: What's Exciting in Scleroderma Resesarch
Переглядів 531Місяць тому
In this session, we will delve into the latest breakthroughs and advancements in scleroderma research, catering to both pediatric and adult patients. Engage with leading experts and gain valuable insights into improving the lives of those affected by this complex disease.
#Teal Talk: Stem Cell Transplant Discussion - June 13, 2024
Переглядів 442Місяць тому
This session features a discussion on stem cell transplants and scleroderma. The discussion will feature Dr. Shah who has performed the procedure, and Kimberly Rodning who is one of Dr. Shah’s patients who has received the treatment.
Teal Talk: Young Adult Panel - June 6 2024
Переглядів 209Місяць тому
This panel discussion focuses on topics important to young adults living with scleroderma. This is the first #TealTalk of the 2024 series, featuring a Young Adult Panel focused on working, dating and parenting while living with scleroderma.
Every Journey Matters - Tiffany Shank
Переглядів 190Місяць тому
During Scleroderma Awareness Month we will be amplifying the voices of people affected by scleroderma who wish to share their story with the world. Tiffany Shank, who is part of the National Scleroderma Foundation Rocky Mountain Chapter, shares the story of how she has navigated life with scleroderma.
Nutrition & Diet with Lon Ben Asher
Переглядів 147Місяць тому
Nutrition & Diet with Lon Ben Asher
Scleroderma Awareness Month 2024 - Every Journey Matters
Переглядів 4402 місяці тому
Scleroderma Awareness Month 2024 - Every Journey Matters
Spring Stakeholder Call 2024
Переглядів 1032 місяці тому
Spring Stakeholder Call 2024
CDMRP Webinar on FY24 PRMRP Funding Opportunities - Learn About the Funding Process and How to Apply
Переглядів 1642 місяці тому
CDMRP Webinar on FY24 PRMRP Funding Opportunities - Learn About the Funding Process and How to Apply
2024 National Scleroderma Foundation Advocacy Training: A Mock Meeting with an Elected Official
Переглядів 2733 місяці тому
2024 National Scleroderma Foundation Advocacy Training: A Mock Meeting with an Elected Official
Proclamations & Light it Teal 2024
Переглядів 3434 місяці тому
Proclamations & Light it Teal 2024
CAR T-Cell therapy in Systemic Sclerosis, Dr. Dinesh Khanna, Dr. Monalisa Ghosh
Переглядів 2 тис.4 місяці тому
CAR T-Cell therapy in Systemic Sclerosis, Dr. Dinesh Khanna, Dr. Monalisa Ghosh
January 2024 Stakeholder Update
Переглядів 1905 місяців тому
January 2024 Stakeholder Update
How Your GivingTuesday Gift Will Help
Переглядів 1147 місяців тому
How Your GivingTuesday Gift Will Help
¡Únete a nosotros en la lucha contra la esclerodermia!
Переглядів 917 місяців тому
¡Únete a nosotros en la lucha contra la esclerodermia!
GivingTuesday | Nov. 28 | One Day. One purpose. One mission.
Переглядів 1348 місяців тому
GivingTuesday | Nov. 28 | One Day. One purpose. One mission.
Quarterly Stakeholder Update
Переглядів 1428 місяців тому
Quarterly Stakeholder Update
Stem Cell Transplantation in Systemic sclerosis
Переглядів 9808 місяців тому
Stem Cell Transplantation in Systemic sclerosis
Celebrating 25 years: Many Journeys, ONE Mission
Переглядів 5899 місяців тому
Celebrating 25 years: Many Journeys, ONE Mission
"The Extraordinarily Excellent Trip to Bass Lake" - Julia's Story
Переглядів 5079 місяців тому
"The Extraordinarily Excellent Trip to Bass Lake" - Julia's Story
Pulmonary Arterial Hypertension,: What does it mean for a scleroderma patient, Virginia Steen, MD,
Переглядів 67610 місяців тому
Pulmonary Arterial Hypertension,: What does it mean for a scleroderma patient, Virginia Steen, MD,

КОМЕНТАРІ

  • @flordemariaceladamorales9596
    @flordemariaceladamorales9596 10 годин тому

    Me gustó mucho como explicó, llevo 6 meses con el diagnóstico que yo misma hice pues soy fisioterapista, el reumatólogo lo confirmó, aquí en Guatemala no hay asociación de escleroderma por lo que me interesan muchísimo estos videos. Gracias mil

  • @lillyrocks2011
    @lillyrocks2011 День тому

    Please create a medication to reduce immensely the skin tightening 🙏🏼

  • @oinamnungshi4256
    @oinamnungshi4256 4 дні тому

  • @sugaplumalex
    @sugaplumalex 7 днів тому

    im so pertified i have this after a vaccine. felt parotid swelling for 2 days after the vax, 5 weeks later dry mouth. initial bloods were ana negative.. repeating them now.

    • @brendabrenner2891
      @brendabrenner2891 День тому

      I am. Long COVID, 3yrs, , w multiple symptoms, dry eye + mouth.. se DrPaul Anderson, Seattle , daily podcasts free, uss

  • @dianebeier8379
    @dianebeier8379 14 днів тому

    Im 71, diagnosed 10 years ago, scleroderma, raynauds, & a few others. Take it one day at a time, live in an area where theres no support groups, GOD IS MY SUPPORT❤❤❤❤❤

  • @dianebeier8379
    @dianebeier8379 14 днів тому

    I am in a similar condition, diagnosed 10 years ago, im 71, its a day to day struggle...❤❤❤❤

  • @lynnsindoni9767
    @lynnsindoni9767 14 днів тому

  • @rohinibhat4955
    @rohinibhat4955 14 днів тому

    I am so glad I was able to view this again. I will add one more thing, communication with family openly and early while you are going through start of symptoms is so important. People who care also grieve for you and want to do everything RIGHT but being in dark for them is the hardest thing.

  • @doctormarklucas
    @doctormarklucas 15 днів тому

    Stem cell transplant is the new age. We know it difficult but there is an organization that support stem cell transplant. If you want a stem cell and you don't know how to go about it, contact us. You will get 50% off the stem cell price.

  • @iohio8677
    @iohio8677 17 днів тому

    💙

  • @lindadockins647
    @lindadockins647 17 днів тому

    From one Warrior to another: keep fighting and never give up. God bless you!

    • @dianebeier8379
      @dianebeier8379 14 днів тому

      Yes indeed, I'm 71, diagnosed 10 years ago, progression is steady, no support groups where I live, I COUNT ON GOD to make this journey tolerable, ❤❤❤

  • @lizann3058
    @lizann3058 18 днів тому

  • @dianebeier8379
    @dianebeier8379 19 днів тому

    Wonderful young lady with a super attitude!😊

  • @dianebeier8379
    @dianebeier8379 19 днів тому

    My heart goes out to you. Im 71 and was diagnosed with scleroderma 10 years ago. It is progressing, I manage to stay positive most all the time.This young lady has been through alot, prayers for her❤❤❤❤❤❤

  • @kerrysanders3206
    @kerrysanders3206 19 днів тому

    Thanks for sharing Barb!!🦋

  • @dianebeier8379
    @dianebeier8379 19 днів тому

    A wise young lady, at 71 with progressing scleroderma, concentrating on things I love, nature, flowers, music, birds, going for rides in the country, and talking with God, keeps my mind off of my deteriorating condotion!!😊😊

  • @dianebeier8379
    @dianebeier8379 19 днів тому

    Im 71, got diagnosed with Scleroderma 10 years ago. Despite living pretty healthy, my scleroderma is progressing and its a ROUGH journey, it feels like fire& pain 24/7...I keep my spirits up by talking to THE LORD, as I live in an area where there are no support groups, and the climate, north, is extreme on my scleroderma. Ive lost52 pounds in 4 years. God is my only support now, but Im HAPPY for those of you that do have a support system, or family!😊😊😊

  • @Nisha-kl8rl
    @Nisha-kl8rl 19 днів тому

    Planet Ayurveda has the best treatment for Scleroderma. Their natural approach has given me significant relief. I’m so grateful for their effective and safe remedies.

  • @TammyBrister
    @TammyBrister 19 днів тому

    Also, USE MITTENS !!!!

  • @TammyBrister
    @TammyBrister 19 днів тому

    Another tool for Reynaud's sufferers with digital ulcers are the silicone spatulas. I use them in the car to release the seat belt and compress the control buttons on the dash.

  • @raniabolotok9555
    @raniabolotok9555 21 день тому

    This is wonderful! I am committed to do this everyday!

  • @farmher3117
    @farmher3117 22 дні тому

    I’m so happy for Kim! God is good! My mom has CREST syndrome very badly and her scleroderma is affecting her esophagus. Does anyone have any direction for me to go to try to help her? Does anyone know how I can contact Dr. Shah? She’s in a terrible flare up and need help outside of what she can get here. 🙏 Thank you for any help you can provide!

    • @farmher3117
      @farmher3117 22 дні тому

      I did find his info at Duke.

  • @lefantthepainter
    @lefantthepainter 22 дні тому

    I just developed hemifacial atrophy with morphea like plaque and I’ve been treated for late stage Lyme by both an infectious disease doc and Lyme-literate rheumatologist within the last three years. I live in US. Lyme specific bands were P39 and P28.

  • @tracyewheless4023
    @tracyewheless4023 25 днів тому

    I was in the SCOT trial and was randomized patient 2 for cyclophosphamide! Still doing great!

  • @Monnknight
    @Monnknight 29 днів тому

    Why was IBIO-100 discontinued?

  • @judycochran4473
    @judycochran4473 Місяць тому

    I have lost family members to this awful thing,is there any hope has your research produced any???

  • @gerricadunning565
    @gerricadunning565 Місяць тому

    This doctor is amazing

  • @Jo-gn6oz
    @Jo-gn6oz Місяць тому

    Thank you for your work

  • @kellyknecht4021
    @kellyknecht4021 Місяць тому

    Hi beautiful! Is there anyway to find the video you did "Hallelujah.. Singing for Stem cells" 2:09 ? It was the most beautiful song I ever heard. I have Diffuse Scleroderma n I'm struggling. That song, you singing it, gave me hope and is so so very uplifting. God bless you and love from Pennsylvania ❤

  • @Seesee422
    @Seesee422 Місяць тому

    I hate myself i look awful

  • @LR-yu3mx
    @LR-yu3mx Місяць тому

    I have symptoms of lupus together with dry eyes and mouth. Have to drink water when eating

    • @LR-yu3mx
      @LR-yu3mx Місяць тому

      I have tears when I cry, though

  • @george.s.8491
    @george.s.8491 Місяць тому

    I was wondering about linear morohia as far as making or at least helping the marks on the skin fade or dare I say disappear? I know it’s a long shot, but maybe not? Does anyone know about this or know where I could find studies or info? I haven’t watched this whole video yet, but I definitely will. Cannabis should be available to anyone that could benefit from it.

  • @TomTague-fk3xo
    @TomTague-fk3xo Місяць тому

    What about semaglutide?

  • @chundulavanya4379
    @chundulavanya4379 Місяць тому

    I am from Austin.. Suffering for the past year and new.. Any suggestions on how to deal with this..

    • @SclerodermaUS
      @SclerodermaUS Місяць тому

      First and foremost, it is important to discuss these things with your healthcare provider team. Our website, scleroderma.org, has a number of informational resources for the scleroderma community. If you're interested in our support groups, please email support@scleroderma.org.

  • @TomTague-fk3xo
    @TomTague-fk3xo Місяць тому

    Just was diagnosed with morphea on my scalp. I never noticed when it was active but now I have the indentation. Need to go back to UT health for a follow up

  • @sherirose1434
    @sherirose1434 Місяць тому

    Amanda, I’m from NJ too!

  • @sherirose1434
    @sherirose1434 Місяць тому

    I am 69 yrs old and have it 22 years.

  • @robinsonresources2
    @robinsonresources2 Місяць тому

    Good talk! Thank you!

  • @giedrejuskiene8927
    @giedrejuskiene8927 Місяць тому

    Hello, what about just having antibodies SCL70, but to symptoms, great lung xray , good capillaroscopy?

  • @ginarogers6899
    @ginarogers6899 Місяць тому

    Hi...Just Made...MY day... God BLESS YOU/I'LL B IN TOUCH...ME SCLE...20 YRS NOW/I'M TELL MYSELF TO KEEP ON ...KEEPN ON... I'LL B IN TOUCH...OK...UMADE MY... DAY ❤

  • @angelavore6705
    @angelavore6705 Місяць тому

    ❤❤❤ ty for sharing ur story and helping others. I'm in awe of u

  • @marcolopez5771
    @marcolopez5771 Місяць тому

    Muy buena información para personal de salud, especialmente para médicos.

  • @SJ-db1lh
    @SJ-db1lh Місяць тому

    Wow, you have an amazing story! Thank you for sharing! 🎉Happy birthday🎂! Wishing you many more happy and uplifting ones! 💜💜🙏

  • @kimgreerpuchek1140
    @kimgreerpuchek1140 Місяць тому

    WALMART IS A KILLER OF SMALL TOWNS. I understand that sometimes the discount prices are tempting, but once we lose the independent market in these small towns, we no longer have a choice of where we shop. Keep breathing 👍

  • @ca.gopalsrathore242
    @ca.gopalsrathore242 Місяць тому

    Very inspiring story. I am also a Scleroderma Patient since 2018. I am doing well with my strong Will Power and mind control. Thank you so much. God bless you with healthy and long life. 🙏

  • @someonesomewhere1228
    @someonesomewhere1228 2 місяці тому

    Yes, probiotics really help reduce the symptomps ... I've been battling scleroderma, overlap with vasculitis, rheumatoid arthritis, and polymyositis for more than 8 years ... This are things that help me go on remission : - Avoid gluten, refined sugar, seed oil (fried stuff) - rich probiotics everyday, i use kimchi, kefir, yoghurt - bone broth helps - i often use moringa, turmeric, curcuma powder drink it like a tea, half tablespoon - vitamin D + K2 supplement - magnesium & potassium rich food - avoid any inflammation triggers - deep and slow breathing technique helps to calm down 🙏

  • @DonaJones-dj7pu
    @DonaJones-dj7pu 2 місяці тому

    Nowhere near me to get proper treatment. I live in Omaha, AR.

  • @brendad7582
    @brendad7582 2 місяці тому

    morphia I’ve had it since I was a child and it looks like a burn mark people say or big bruise and it grows and shrinks but it never goes away and I’ve noticed when it grows my back in that area gets so itchy and when it shrinks it feels like the tissues and the muscles tighten up and it feels like it’s squeezing my ribs.

  • @NoelDyanasty
    @NoelDyanasty 2 місяці тому

    I justvgot diagnosed with it this pass week thank you

  • @PeggiCichon
    @PeggiCichon 2 місяці тому

    How do I get Dr Freeds email?