Achondroplasia

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    Hi everyone, today one year has completed of my operations. Last year on same day angioplasty has done of mine i.e one cp stent has fitted in my arota. then my all friends, girlfriend left me only my parents has stood with me . I cried for some days but god did to me..but now i m confident that God has done everything for right..when i found this app ,then i found that I'm not alone . So please who wanna talk to me.. please talk... #heart problem # congenital #CongenitalDiaphragmaticHernia #CongestiveHeartFailure #InvisibleDisability #invisible diseases #CHDAwarenessWeek #Diabetes #BornThisWayFoundation #Achondroplasia #CoronaryHeartDisease #Depression #Anxiety

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    Help need to test a questionnaire

    I work for a research firm in Canada, Sapiens Strategies. We are looking for a parent living in Canada of a child with achondroplasia, to validate a questionnaire about quality of life. We don't need the answers just your feedback on the language used in the questionnaire. Please don't hesitate to contact me for more information. We are offering $130 for the participation that consist in a 1h15 telephone interview. Carole.charland@sapiensstrategies.com

    #Dwarfism

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    How my rare disease child predicted Game of Thrones. (sorta)

    Here be dragons!

    Spoilers follow for the season finale of Game of Thrones.

    You’ve been warned.

    I’m not going to whip up a fan theory on how the eight season long tale of Westeros is a #RareDisease parable. Bran becomes a wheelchair user after a fall, not due to a disease. Maybe we can argue Tyrion’s #Dwarfism comes from #Achondroplasia (not rare, but it’s a mutation of the gene FGFR3) which affects actor Peter Dinklage. But the show was never about that, cause you know science.

    Instead Bran. Bran abides. Bran endures. Bran persists. He overcomes. He gets vision and wisdom. He gets a wheelchair. And ultimately the wheelchair is the throne. Yes, the coveted titular throne, the iron throne forged of the swords of defeated rivals, literally melts away into irrelevance.

    And upon what new throne will the new king sit? A wheelchair! I love it.

    And I kinda predicted it. Or maybe my ten-year-old who has #MenkesDisease did. October 2018,

    Lucas dressed for Halloween in his wheelchair as Bran on the Iron

    Throne. Some thought it inappropriate. His school had an explicit no

    costumes with weapons policy. I’m sure many asked “Are they really

    letting their 10 year-old watch that show?”. For the record at the time

    we were not. So yeah I can’t say Lucas was a fan of the show or had

    any insights into it. It’s totally dad projecting his fandom onto his

    kid who can’t speak up to pick a different favorite costume. But this

    spring Lucas did begin to watch GOT when his nurse was at our house.

    They’d watch together and he really responded to the spectacle of the

    dragons. A favorable response, not a terrified freak out.

    Someday we can argue (or maybe right now in the comments section) the

    merits of Westeros voting in another white male. I mean they’d have no

    issue voting for a qualified woman to lead them, just not that

    woman. Right? And why do we have to call him Bran the Broken? I don’t

    know, maybe they get a pass since this is set before the Age of

    Enlightenment. But all that aside, exulting the kid with disabilities to

    the highest office in the six kingdoms? —that works for me.