Things Not To Say To People with Multiple Endocrine Neoplasia

แชร์
ฝัง
  • เผยแพร่เมื่อ 16 พ.ย. 2024

ความคิดเห็น • 51

  • @kristylagoe2169
    @kristylagoe2169 6 ปีที่แล้ว +7

    Loved your video! My daughter, who is 14 years old, has MEN2b. She hasn’t met anyone else with her disease. Watching her watch the two of you & smiling made my so heart full❤️ thanks for helping her feel less alone!

    • @riddicksraven
      @riddicksraven 6 ปีที่แล้ว +1

      Are you on FB? There are MENS support groups and MTC groups with wonderful people there. One of the groups has a kids only messenger group.

    • @kristylagoe2169
      @kristylagoe2169 6 ปีที่แล้ว +2

      riddicksraven Yes :-) we are on several groups on Facebook, they have been lifesavers for us!

    • @riddicksraven
      @riddicksraven 6 ปีที่แล้ว +1

      Oh good! They have been wonderful for us too. We don't feel so alone now because of them.

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว +1

      Hi guys! Oh gosh the response we’ve had from our MEN community has made us feel so warm and not alone. The group AMEND run information days and family weekends to help build community and inform family members about the condition. (The one I am familiar with is run in UK, Jo Grey is an amazing woman role model who runs AMEND) Groups on Facebook and generally doing creative things like this to open up our small community. Thank you for all the love :) xxx

  • @rongamblin2107
    @rongamblin2107 4 ปีที่แล้ว

    You both are precious. God loves us, I am a brilliant Texan, transplanted in California USA ! My oldest family say we came from Northern England. I have Bipolar Disorder. Just now I felt close to you Joel, for the way people treat us. The baffling things they say. Try this one on for a laugh after a bought with Bipolar Depression. You look as though you lost your best friend ! God Bless You and Yours !

  • @sscofield26
    @sscofield26 6 ปีที่แล้ว +3

    Love it . I was diagnosed 4 years ago have had 3 quarters of my pancreas out gallbladder and spleen and 3.5 parathyroid glands removed . It's deff a daily battle . Everything in this video is so true lol love it keep the content coming I'll be watching for it

    • @JoelRussellWinter
      @JoelRussellWinter  6 ปีที่แล้ว

      Cheers for taking the time to comment Shawn! Ah man that sounds rough, glad to have you along for the ride though mate - new video every week!

    • @scarba
      @scarba ปีที่แล้ว

      I’ve got men1 and am waiting for doctors to decide on pancreatic tumour removal. I’m terrified of the surgery. What was it like?

  • @StrawBerry_VR12
    @StrawBerry_VR12 6 ปีที่แล้ว +1

    Brilliant! I have encountered every single one of these comments as an MEN1 sufferer. Well done on raising awareness!?!

  • @emmalewis89
    @emmalewis89 6 ปีที่แล้ว +4

    Have MEN 1 myself, and can really identify with everything you've said. "At least it's the good kind," and "you don't look sick."

    • @JoelRussellWinter
      @JoelRussellWinter  6 ปีที่แล้ว

      Yeah these ones can really get to you - especially if you're feeling pretty fragile at the time!

  • @sandlupa8493
    @sandlupa8493 6 ปีที่แล้ว +2

    ❤️️❤️ sending you two lots of Love from Germany. My two kiddos and I have MEN type 2A. Often I can't even put in words how I feel. I am very much touched and inspired by your openness and your uplifting spirit! Thanks for making this video and am looking forward to Part 2

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว

      Sending warmth and love your way Sandra. Thank you c

    • @scarba
      @scarba ปีที่แล้ว

      I’ve got men1 and am also in Germany! British in Germany. I got my parathyroid and thyroid and adrenal gland removed because I got Cushing’s and then had adrenal insufficiency for years. Is there a support group in Germany?

  • @meegingernoodles91
    @meegingernoodles91 4 ปีที่แล้ว

    Just got diagnosed with MEN1 6 months ago. Love the video :)

  • @JackElliottHobbs
    @JackElliottHobbs 6 ปีที่แล้ว +3

    I find it amusing how Hope constantly drifts towards the centre of the frame. Almost pushing Joel out. :D

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว

      Jack Hobbs Joel who he.

  • @jayers375
    @jayers375 6 ปีที่แล้ว +2

    great stuff! it's cool to have you guys talking about it so positively!

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว

      Jack Ayers thanks Jack :)

  • @AMEND3
    @AMEND3 6 ปีที่แล้ว +2

    Thank you Joel and Hope - many of us will relate to these! xx

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว

      AMEND3 ♥️♥️♥️

  • @cendireyna4947
    @cendireyna4947 6 ปีที่แล้ว +2

    Finally found someone I can relate to!!

  • @riddicksraven
    @riddicksraven 6 ปีที่แล้ว +1

    Oh yes do another one! My daughter is 19 and has MENS2b and MTC. Loved this one.

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว +1

      riddicksraven we are on it! High five to your daughter from us x

  • @gilld1957
    @gilld1957 6 ปีที่แล้ว +1

    Great video you two! Love your sense of humour and glad to see your positivity shining through :)

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว

      gill underhill thanks gill :) x

  • @sebwesson7609
    @sebwesson7609 6 ปีที่แล้ว +1

    Comdey duo in the making? Well done guys xxx

  • @andreab7445
    @andreab7445 6 ปีที่แล้ว +1

    I have men2b, I was diagnosed when I was 21. you’re both adorable ❤️

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว

      Andrea B thank you for commenting! It’s nice to see so many MEN people connecting!! X

  • @aaronmalcolm3350
    @aaronmalcolm3350 5 ปีที่แล้ว

    Your videos are amazing, I’ve just been diagnosed with men1 at the age of 36 so far just parathyroid tumour and gastrinomas...bring on all the other issues in the future hahaha it’s nice to see two people who can laugh at the situation that many of us face! A massive thanks from me as your videos have helped me so much!

  • @darkbeauty2487
    @darkbeauty2487 6 ปีที่แล้ว +1

    I got diagnosed yesterday 05/24/18 with MEN1.

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว

      Dark Beauty hope you’re okay?! X

    • @JoelRussellWinter
      @JoelRussellWinter  6 ปีที่แล้ว

      That must be difficult, but I hope you can take something positive away from this video. At the very least - you're not alone! There's people all over the planet with MEN who are happy to talk to a fellow patient.

  • @cecileclark11
    @cecileclark11 6 ปีที่แล้ว +1

    Hey loved your video! my family too has men1 so i completley get were your coming from. I havent found out yet But my two older sisters have it! Thankyou for sharing 🙂

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว +1

      cecile Clark it’s so cool to see so many people with MEN connecting on here - we had no idea this community could be so present online. Thank you for commenting and all the best xx

  • @stevenwatson4955
    @stevenwatson4955 4 ปีที่แล้ว

    Very interesting I never heard about M.E.N . Hope I just had a idea .. what about you and brother doing a duet . Vancouver Steve ( no.1 Canadian fan )

  • @stufish4040
    @stufish4040 6 ปีที่แล้ว +2

    You guys are great . . . top-notch humans, I'd say ;)

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว

      stufish4040 haha thank you :) x

  • @natalieragnarsson5601
    @natalieragnarsson5601 3 ปีที่แล้ว

    Hi. So, I learnt my friend has MEN 1 and let's take it the other way round - what TO SAY and how can I help him and support him ?
    Please, please answer, it's important to me.
    Thank you,
    Kind regards

  • @lubbiee6812
    @lubbiee6812 6 ปีที่แล้ว +1

    I have men2d I was diagnosed when I was ten

    • @hopemusicuk
      @hopemusicuk 6 ปีที่แล้ว +1

      Lubbiee gosh that’s young! I was 13. Sending big hugs and we are here if you have any questions! X

  • @JackElliottHobbs
    @JackElliottHobbs 6 ปีที่แล้ว +3

    So, how long do you have?

  • @kristiannordvall
    @kristiannordvall 6 ปีที่แล้ว +1

    Coolt

  • @scorpiosag5902
    @scorpiosag5902 5 ปีที่แล้ว

    Too much joking around. It got annoying. I hope I can find more ppl’s stories dealing with this disease. My son was diagnosed at 15.

  • @illeelaiil
    @illeelaiil 5 หลายเดือนก่อน

    🤦