Rezultati pretraživanja
  1. 4. velj

    Although I diagnosed with Marfan syndrome and joint hypermobility syndrome, I felt relief because finally I know the cause of my pains. With all the pain I go through, I decided to support others with the same conditions

  2. Day 7: It's . Marfan Syndrome is a that affects 1:5000 and 1/2 unaware & at risk. Help us raise awareness. 600 people in Ireland at risk. Please like & Share to save a life.

  3. prije 22 sata

    Savez vous que 300 millions de personnes souffrent d’une maladie rare? Rejoignez-nous sur impatients! Une initiative de financement collaboratif pour soutenir la recherche sur les maladies rares ⁦

  4. 5. velj

    "This is my Marfan Syndrome Warrior Princess Kelly (11 yrs old) and me (Mom) Tammy. We are wearing our Marfan Awareness sweatshirts and made 30 red ribbons & 30 pens to give our to family, Kelly’s teachers, and Kelly’s doctors for .

  5. 5. velj

    Available from our online shop, these interlinked wristbands are a great way to draw attention to your connective tissue disorder (other 'flavours' and goodies are available). www.

  6. 4. velj

    تم تشخيصي بمتلازمة مارفان و أنا بعمر ٢٩ سنة وهذه السنة شخصت بمرونة المفاصل تعد من أعراضه مع ذلك شعرت بالرضى والراحة لان عرفت كل الآلام هو سببه و مع الوعي عرفت أتعايش ومتصالحة معه و من تجربتي قررت أني ألهم وادعم اصدقائي معنوياً 💓

  7. 3. velj

    Free download for those seeking or suspecting a diagnosis & help make sense of signs. Already have a Dx? Share this! You just might hand it to someone who needs this potentially life-saving information right now.

  8. 3. velj

    جميع الحالات بمتلازمة مارفان مختلفين عن بعض ومافي شيء ثابت متفق عليه وايضاً صعب التشخيص ولكن الطول والذراع الطويل هم سمات الي تميز من يحمل هذا التشخيص. * سأقوم بترجمة التغريدات خلال الشهر لعل حد يستفيد من أصدقاء متلازمة مارفان.

  9. 3. velj
  10. 3. velj

    I’m a 5 ft 7 female and I still have marfans! While many people with marfans are very tall and thin, not everyone is!

  11. 3. velj

    Every case of Marfan syndrome is different, and not everyone with Marfan syndrome has all the classic characteristics. This can make it hard to diagnose. Height and arm span continue to be the leading indicators of Marfan, though.

  12. 2. velj
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  13. 2. velj

    Part of is being real about what it means to live with marfans - I cried while cleaning today because it was so physically exhausting. I love my life but the little difficulties like today are what motivate me to pursue rare disease research and (1)

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  14. 31. sij

    3/3 February is and we can't wait to get it going! Here's what you can do: Finally, set up a Marfan Day of Giving (2/18) fundraiser. The more the support, the further our efforts go! (include in the title)

  15. 31. sij

    1/3 February is and we can't wait to get it going! Here's what you can do: First, download your favorite graphics and use them however you like to tell your story and encourage others to spread the word.

  16. 27. sij

    "My name is Keegan from Lucasville Ohio and my victory is I have a strong support system from family and friends." Share your victory & spread awareness in Feb for .

  17. 14. sij

    Victory can can be an everyday activity or it can be a medical breakthrough. It can be yours or someone else's (like shared about his wife, @marfanladynath!). Tell about your victory for using .

  18. 8. sij

    We're gearing up for in Feb and you can be a part of this year's campaign. Share your with the hashtag to help spread awareness. We can't wait to see how YOU celebrate your victories! All the info:

  19. 7. ožu 2019.

    Hi Twittertastic, my oldest kiddo surprised & delighted me by asking to Walk for Victory to support The Marfan Foundation--would you help max out our effort?

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