"Dear Scleroderma" Chanel's Story

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  • Опубліковано 22 січ 2025

КОМЕНТАРІ • 42

  • @carlagrant6454
    @carlagrant6454 Місяць тому +1

    Just got diagnosed Rheumatologist been leaning toward it it's confirmed systemic sclerosis diffuse it's a slap across the face very challenging stay strong one day at a time iam learning new information

  • @onemysore6120
    @onemysore6120 4 місяці тому +1

    I feel very honored to have heard this story and to learn about this condition and its brave victims.

  • @BKBKification
    @BKBKification Рік тому +14

    My mother lived and died with Scleroderma. No one ever knew what I was talking about

  • @lillyrocks2011
    @lillyrocks2011 9 місяців тому +5

    Why there's no a cure? But Why there aren't yet better treatments!??? Why do we have to suffer tooo much? From this terrible, crazy, horrible, killing, limitating disease.
    😞😢
    Please scientifics, pharmaceuticals, support us, we want to live instead suffering. 🙏🏼🙏🏼

  • @sega_sistarz
    @sega_sistarz 2 роки тому +11

    "Taking shower and pulling out chunks of my hair" and "tired all the time". Yes. 😢
    You are so strong and so inspirational. 💪
    When I got my Scleroderma diagnosis, I tried to do everything to disprove it. Be anything else, I thought. As a single parent with two kids, I begged..." Please be anything else." I understand that depression that comes with having the diagnosis...you are a really inspirational person. Your words inspired me and give me hope (not hope to heal, but hope that I can be happy and live with this).

  • @lillyrocks2011
    @lillyrocks2011 2 роки тому +13

    Please scientists find a cure or better treatments! 🙏🕯️ There are more and more people each time with this terrible disease.

  • @QesankhMaaKheperu
    @QesankhMaaKheperu 8 місяців тому +2

    My mother had Sclerodema. She died and now I wish they would discover a cure for it. No one should ever have to experience it.

  • @brownkisharae7283
    @brownkisharae7283 8 місяців тому +4

    Keep your head up u r beautiful in strong I also have scleroderma im 37 with five children

  • @mstee3355
    @mstee3355 Рік тому +15

    I too have MCTD with the same diseases. … it attacked my lungs and now I have pulmonary fibrosis… the hardest part is ppl are uncaring because you don’t look sick

    • @gigigastelum9910
      @gigigastelum9910 11 місяців тому +4

      It really is cruel that they don’t believe you or think we exaggerate

    • @parulbishnoi8070
      @parulbishnoi8070 9 місяців тому +2

      Yes so true e😢

    • @ihop8783
      @ihop8783 5 місяців тому +1

      It’s sad.

  • @matios6013
    @matios6013 2 роки тому +9

    Is hard to see à loved one .sick😥🙏🌺🌻

  • @aleciacoleby1085
    @aleciacoleby1085 Рік тому +5

    Just watched your video and I'm inspired by your approach to this disease...keep pushing, keep sharing and keep empowering ❤

  • @QueenoftheSlay
    @QueenoftheSlay 2 роки тому +4

    Yay Chanel. Such a nice person.

  • @sallymagaret6209
    @sallymagaret6209 Рік тому +6

    It's a horrible sickness suffering it's not nice I hate that word of that sickness as a Mother I went through that it's horrible with my daughter suffering no cure

  • @Strong_selflove
    @Strong_selflove 2 роки тому +3

    Love love love

  • @bluejunegraduate
    @bluejunegraduate 2 роки тому +4

    I remember reading her blog when I first was diagnosed with MCTD. It definitely helped me through.

    • @lillyrocks2011
      @lillyrocks2011 2 роки тому +1

      What's her blog? Do you have Scleroderma too?
      Warm regards. I have limited Scleroderma.

  • @shananbeig46
    @shananbeig46 8 місяців тому

    It looks like you are in Seattle area. I am also and I have limited scleroderma. With fibromyalgia. I am always looking for a good rheumatologist. I’ve seen someone at UW but wasn’t pleased.

  • @lillyrocks2011
    @lillyrocks2011 9 місяців тому +2

    Please scientists, createe a medication for our skin!! We could remain active despite the disease. A medication that controls the collagen over production. Please 🙏🏼🕯️🕯️🕯️🙏🏼

  • @ElaineHammond-l2l
    @ElaineHammond-l2l Місяць тому +1

    How is Chanel today November 2024

    • @mistykeens5290
      @mistykeens5290 Місяць тому +1

      I wonder about that also. Diagnosed just this year with diffuse systemic sclerosis/progressive scleroderma in May 2024. Anyone know how she is?

  • @rdixauthor
    @rdixauthor 11 місяців тому

    As soon as I saw you, I knew you were the tube -fed wife. You're so beautiful and I followed you for a long time ❤

  • @elizabethsamuel2894
    @elizabethsamuel2894 Рік тому +2

    How bad were your levels?

  • @terry7344
    @terry7344 6 місяців тому +1

    how old are you? can you walk us through your journey how you found out? im nervous

  • @Cfdyhbbguubvv
    @Cfdyhbbguubvv Рік тому +4

    There’s no treatment. It’s a complete joke. But she’s amazing. I’d like an update! How do I find her channel

    • @ganeshnasina7291
      @ganeshnasina7291 Рік тому +2

      It's not a joke there is no cure for it. My wife is also suffering from sceloderma

    • @gigigastelum9910
      @gigigastelum9910 11 місяців тому

      @@ganeshnasina7291 I think she meant that it’s a joke that the doctors haven’t figured this out when there should be more focus on finding what works

    • @manyaofficial684
      @manyaofficial684 11 місяців тому

      Steem cell transplant

    • @Xray858
      @Xray858 9 місяців тому

      ​@@manyaofficial684 can you tell me more please. What country do that therapy?
      I am from Greece I diagnosed 2020. I didn't hear that here in Greece

  • @franny5295
    @franny5295 Місяць тому

    I wonder if a bone marrow transplant could fix that?
    Edited to add: She got the transplant. Did she make it?

  • @elizabethsamuel2894
    @elizabethsamuel2894 Рік тому +2

    What is the treatment?

  • @cjrsalinas7334
    @cjrsalinas7334 10 місяців тому +4

    I understand autoimmune disease sucks!

  • @pursedelighted
    @pursedelighted 9 місяців тому +3

    Chanel you are beautiful. Beautiful eyes

  • @martinmuller320
    @martinmuller320 10 місяців тому

    When the body says no - gabor mate and neurofeedback

  • @andrearossi7063
    @andrearossi7063 Рік тому

    ♥♥♥

  • @DeJaVuCa
    @DeJaVuCa 11 місяців тому

    So what the heck is IT? smh

  • @porter6287
    @porter6287 2 роки тому

    Pᵣₒmₒˢᵐ