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Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days.
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Isaiah Austin Diagnosed with Marfan Syndrome, Ending Potential NBA Career

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Sushi, Jun 22, 2014.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson likes this.
  2. sueami

    sueami Senior Member

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    I'm so sorry to read this. My younger cousin has Marfan's, and has needed numerous heart and chest surgeries since the age of 5 to survive it.
     
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  3. Allyson

    Allyson

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    that is sad Sue - hope he is OK - Marfan's is related to Ehlers- Danlos so have you looked into that for yourself? Symptoms are very like ME symptoms.

    I think Naomi Campbell may have Marfan's too - many supermodels do and she is very bendy - looking - you can see her moving a lot even when she talks - like Diana Driscoll does. Visibly hypermobile.

    And the temper tantrums - alleged ! - would be consistent with POTS - which can make you feel angry/anxious due to the excess adrenaline.


    Ally
     
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  4. Valentijn

    Valentijn Activity Level: 3

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  5. sueami

    sueami Senior Member

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    I have not, yet, @Allyson but thank you for the heads' up. If current protocols don't generate big improvements or if I develop POTS, I will definitely remember about EDS as a possibility.

    I cannot, however, touch my tongue to my nose, nor do I have the classic heart-shaped face, so I'm hopeful my fix is an easier one.
     
  6. Allyson

    Allyson

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    no you do not need those symptoms - many do not have them.
    A friend just went for a Dx with a god specialist yesterday and even though she is only about 168 cm he suspected Marfan's - He measured her arm and leg to body ratio

    - apparently that counts more than just height now - she is also very thin and does not put on weight easily.

    Ally
     

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