Menkes Disease

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Hi, my name is lynnebeez. I'm here because I have a number of autoimmune diseases including Addison's Disease and Behcet's Disease and I want to share information and treatment ideas

#MightyTogether #MenkesDisease

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The Menkes documentary screenings

Most of you probably already know this but the Menkes documetary will screen in Boston on September 12 and in San Francisco on the 9th and 10th.


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.

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