Bardet-Biedl Syndrome Patient and His Parents Describe Their Diagnostic Journey

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  • Опубликовано: 23 ноя 2024

Комментарии • 9

  • @cleohawkins7849
    @cleohawkins7849 2 месяца назад

    My friend had bbs. Thank ypu for sharing. He is so cool.

  • @Sharon-cd9lp
    @Sharon-cd9lp Год назад +1

    Thank you for making this video.

  • @ВладимирНовгородский-г6з

    My daughter have bbs too, and son. I understand your problems. I know about bbs of my daughter when she 10 years old. My son had fainting when he wos small, befire 3 years. Its very hard, when we gave sick children. But live is continue, and we must live despite everything.

    • @CathyLuzader
      @CathyLuzader Год назад

      I wish you good luck for the kids. Does any of your kids have vision problem? I have a kid who is 9 and have bbs. And he is having very hard time with vision.

    • @ВладимирНовгородский-г6з
      @ВладимирНовгородский-г6з Год назад

      @@CathyLuzader I have two children with this syndrome. I took genetic tests. My daughter has 2 genes impaired, my son has 3. A vision problem is not so bad. they have problems with development, with intelligence, with weight, etc.

    • @CathyLuzader
      @CathyLuzader Год назад

      Thank you for replying. My son is having issues with weight, development and vision. My main concern is vision because he is hitting the walls now. He is very small 8 years old so I am wondering if there is anything which could be done to improve or stop how much vision he has. My doctor says he would be legally blind early adulthood and I should teach him cane. And i am very worried. How are your children doing with vision.@@ВладимирНовгородский-г6з

    • @thatbbguy
      @thatbbguy 3 месяца назад

      ​@@ВладимирНовгородский-г6зis this disease can be cured?

  • @Sandra-u7q1f
    @Sandra-u7q1f 8 месяцев назад

    How old was your son when he started to go blind?

  • @lononya6494
    @lononya6494 8 месяцев назад

    What causes this? Does this only happen with consanguineous relationship/parents?