Rezultati pretraživanja
  1. Osobe Vidi sve

  2. 4. svi 2019.

    Good luck! Best wishes! I tried to update professors re daughter’s : 2 heart surgeries & 9 spinal surgeries since spring 2014 Not every prof was sympathetic. Phd is now Master’s #2. I should have advocated more for myself. Don’t give up!

  3. 28. srp 2018.

    Hal Dietz, one of my hero’s! Most definitely a champion of hope!

  4. 15. ožu 2017.

    My moment: my daughter seeing my husband again post a 2nd open heart, a craniectomy, & 30 days apart

  5. <- My adult son has this disease and need support and prayers.. anyone know about any new treatment?

  6. 6. ruj 2019.

    HAD2019 has begun! Dr. Dianna Milewicz kicks of the conference with 20 years of evolution about Heritable aortic disorders.

  7. 30. tra 2019.

    💙 Thank you, , for following me! We both have the same rare , . She had surgery by the same vascular surgeon, Dr. Joseph Bavaria, who'll be doing my , if my aortic root valve dilates at all. 💙

    "I love someone who is rare" memé, has light, blue-gray  background. The newly designed icon, a pair of blue jeans, with one dark-blue leg, & one light-blue leg, drawn in the shape of a symbolic ribbon. A white dot above, to dot what becomes the letter "I". A white geometric heart shape, that looks artistically drawn with white lines roughly sketched horizontally to form the shape of a heart.
    A anatomically labeled  illustration of the human heart.
    A list of the five different types of Loeys Dietz Syndrome, and which unique genetic mutations cause each type.
    Description of  the rare connective tissue disorder called "Loeys Dietz Syndrome".
  8. 9. lip 2019.

    SPS 2nd graders, Connor and Tino, walked this morning in honor of awareness month. The event was hosted by Connor and his family! 100% of the proceeds went to support The Loeys-Dietz Syndrome…

  9. 17. stu 2017.

    Heads up, Vancouver! New dates: Nov 17 (today) and Nov 19 will be lit red recognizing awareness of Genetic Aortic Disorders! If you see the sails, please share

  10. 9. srp 2019.

    4 children, 1 with Daughter w 2 heart surgeries 9 spinal surgeries since 2014. Stopped & started & completed Masters #2 in 2019. Starting & 2019-20. . is my

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  11. 24. stu 2017.

    Look our little warrior is poster child

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  12. 9. ožu 2017.

    I have a rare connective tissue disorder. Proper monitoring and care is vital.

  13. Yeah man, my brother is diagnosed with His aorta had to be replaced as it was dialated, an artificial valve was inserted to help regulate blood flow. He has to take blood thinners for the rest of his life, he's now 26 and thriving. I'm glad you're here bro.

  14. 29. sij

    My chronic illnesses look like this at times yet are seemingly invisible for the most part. I’m wanting to post more to raise awareness. My dad died 2 years ago and that’s the ONLY reason I know what’s wrong with me.

  15. 1. ruj 2018.

    September is Aortic Aneurism and Dissection Awareness month. Get educated and save a life. John Ritter died of an aortic dissection.

  16. 7. kol 2018.
  17. 3. tra 2019.
  18. 16. ruj 2017.

    Debbie had 3 major heart ops on the . Don't they make a lovely couple. Marrying my gorgeous boy Sean.

  19. 23. tra 2019.

    If you haven’t followed them yet, check out the amazing brand ! Their latest video features our 🔥CELIA💥 talking about living with & embracing your differences w confidence!

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