Current Events > I was inevitable. Ask me anything.

(+) Yeah! (+)

I was born with a rare form of Muscular Dystrophy called "Myotubular Myopathy." This disorder, MTM1, severely weakens the voluntary muscles and nothing else. I eat via a tube. I use a wheelchair to move. I type to communicate. I breathe via a machine. I'm 31 and a Communication Major. I spend my days writing video game walkthroughs.

When I was born, nobody knew what was wrong with me. Eventually, a geneticist diagnosed me. She said I would be dead soon. My parents found nineteen other families with MTM1 babies. They sent their information to every children's hospital that had a genetics department. The geneticist also received a copy. Dumbfounded, the geneticist sent a grant request to the Muscular Dystrophy Association. She got the grant, then, after much research, identified the offending genetic marker in Mom's family.

I imagine that it was inevitable that "MTM1 awareness" would eventually lead to a treatment. As of August 2020, a company is testing the dosages for a pre-established drug that might restore some muscle function. This drug, Tamofixen, has been shown to treat the protein imbalance that causes the muscle weakness.

I'm glad that I can do my part with such grace.

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Angling to get some tamofixen trials run on you?

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Guide posted...

Angling to get some tamofixen trials run on you?

No. They're in Europe and I'm happy as-is. Furthermore, I want it done correctly. Haste leads to recklessness.

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Talk about grace. I'd- well, I can't say what I'd do. I have no idea.

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Do you wish you had a complete pout before you got burned by people who strive?


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Guide posted...

Talk about grace. I'd- well, I can't say what I'd do. I have no idea.

The trick was to fixing my depression was realizing that I am a loving and supportive person and that I must always be ready to help others through their troubles.

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TheDogfather posted...

The trick was to fixing my depression was realizing that I am a loving and supportive person and that I must always be ready to help others through their troubles.

Excellent philosophy. You got dealt a challenging hand, but you can still win the game.

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TicketOak posted...

Do you wish you had a complete pout before you got burned by people who strive?

I used to resent everything about myself until a few Wednesdays ago. While in bed, I realized that we, as a species, should do our best to uplift out loved ones. Since I know I'm good at this, I see no reason to hate myself.

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Gobstoppers12 posted...

Excellent philosophy. You got dealt a challenging hand, but you can still win the game.

We all "win" by doing our part in the service of others.

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@Eliza-Schuyler You told me to tag you when I made this topic.

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TheDogfather posted...

You told me to tag you when I made this topic.

oh yes! i think that its awesome that you have challenges and yet you can keep going and be so positive. thats a hard thing to do. bravo.

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Eliza-Schuyler posted...

oh yes! i think that its awesome that you have challenges and yet you can keep going and be so positive. thats a hard thing to do. bravo.

This wasn't easy. Two months ago, I was beyond miserable. After I realized my purpose, everything clicked.

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I'm bored and sleepy.

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Hm.

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Best wishes, you're a trooper.

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What do you think of Thanos?

Aridi posted...

Best wishes, you're a trooper.

Thanks.

RedJackson posted...

What do you think of Thanos?

He's a sour grape.

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