Tags » Rare Disease

Crash and burn

So it seems my mystery cortisol crash on Friday was not going to be an isolated event.

It happened again on Saturday, just like Friday. I woke up, had my lemon water, watched a bit of tv, and started falling unconscious. 106 more words


They all walk on all fours..! Uner Tan Syndrome

This is a very rare and bizarre genetic disorder first described by Uner Tan in 2005 when he observed that 5out of 19members of a Turkish family were accustomed to walking on all their four limbs instead of two. 270 more words

Transplant Advances: Ice-Free Preservation - A Potential New Standard?

In the early days of my blog, I mentioned the warm perfusion preservation technique, ex-vivo.  Yet, this advance & the technology is not available to all patients & all centers just yet.   350 more words

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Having no control

One of the most frustrating parts about this illness, is even when I wake up and do everything right, and when I decide I’m okay with everything I’m given… My body can decide otherwise in a moment’s time and everything can change. 1,060 more words


The 3rd Gene Rumbling in TSC Has Been Silenced

The TS Alliance alerted me to a very interesting research finding as of late.  I have mentioned this rare disease of mine a few times, but it is basically a genetic disorder that causes benign tumors on several of the body’s organs.   295 more words

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Kids Table or Big Table?

Thanksgiving brings back so many memories for me.  Though I’m usually not with my parents & family (the plains states weather is too unpredictable), I’m with close friends who make it a nice day.   558 more words

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You go through the multitude of options in your mind what seems like a million times, the best case scenario, the worst case scenario, the bad, the in between, the unimaginable… Your mind helps you explore these options until there simply is no more, and then at a certain point you just find peace. 1,280 more words