Annie Barlow - Patient Perspective

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  • Опубликовано: 2 ноя 2024

Комментарии • 7

  • @SuePZZ
    @SuePZZ 5 лет назад +2

    Wonderful presentation, Annie. "Make hay while the sun shines and do it now before you can't" is my motto. I lost my friend to vEDS in May, she was an amazing, strong and determined lady, just like you. I felt her talking through you. Much love from England; I'm so sorry they chucked you out! xx

  • @daniellehendriks5992
    @daniellehendriks5992 5 лет назад +3

    What a good job, telling your story on stage... Brave!!
    I suffer from hEDS and reumatoïde psoriatica. 48 years old, married and mother of a daughter and a son (23 and 21) and I live in the Netherlands Europe. The children both have symptoms but choose to live and have fun. I understand but it's hard to let them go and do the things they love. I got my diagnoses at age 40 after 25 years of unexplainable pains and discomforts. If I had known, perhaps giving birth to two babies was something that perhaps, for there sake, something that I shouldn't have done. I would give anything so they can live a life without the pain, discomfort, surgeries etc. I live my live in bed or wheelchair. Try to have fun but it's hard. Even the closest friends don't understand. On the outside nothing is wrong.
    Thank you again for telling you story!! Love Daniëlle

  • @MicheleJane
    @MicheleJane 5 лет назад +1

    What a courageous person you are Annie. And with a great sense of humor! I hope you continue to endure, and enjoy your life. I hope to be able to meet you soon at your and my nephew Jasons wedding! All the best to you. Michele

  • @julieshenk7640
    @julieshenk7640 3 года назад

    This was an amazing sharing. I hope and pray things went as planned and going forward one day at a time.❤️

  • @genegirl
    @genegirl 5 лет назад +1

    Thank you Annie for sharing your story with us about vEDS. I wish you all the best and enjoy your wedding day, I'm sure it will be beautiful.

  • @edwardfeeney1258
    @edwardfeeney1258 5 лет назад +1

    Annie I understand I have EDS as well I have elasticity of the joints lack of muscle mass enlarged heart it stopped me from doing a lot of things I wanted to do I did want to give up I got so angry as well as a person who lost faith in belief in life in gen