Old forum post: an example of why medical visits make me so anxious

This is another one of my posts from the old Narcolepsy Network support forum. This one was posted November 25, 2015. It was well before I had any clue that I was #actuallyautistic but my reaction to the situation makes perfect sense when I re-read it framed through that new understanding. This was just one... Continue Reading →

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Snow daze

I meant to get on this blog all last week; getting that diagnosis was such a huge thing after many years being bounced from specialist to specialist and there  is so much I want to say about all this, but my POTS and other dysautonomia symptoms have been really out of control lately and it... Continue Reading →

Stripes

This is going to be a short one because I've been up since four am and because I've just spent the last 20 minutes cleaning up my end table in the den after I dumped my water bottle of homemade electrolyte solution all over everything. :-/ Today I had my evaluation at the genetics center.... Continue Reading →

Oil Slick

So about a week or so ago, I noticed I was almost out of the paleo protein powder I mix in with my smoothie, but when I went to order more, I discovered that it was discontinued. I've been trying to come up with something else that doesn't have pea protein or sweeteners in it.... Continue Reading →

POTS is (still) the pits

I had a good spell for a little while where the POTS and other dysautonomia symptoms improved so much that I started to question whether I had just exaggerated how bad they were to begin with, in my mind. I don't know if that sounds weird, but I have this constant worry that people will... Continue Reading →

Repairing the Human Germline – One Small Step at a Time

As much as I find this technology really fascinating, I just see it going to some really dark places… not just because I’ve read too much Phillip K. Dick, but because so much in our culture now resembles something he wrote.

How about, for starters, a sharp decline in neurodivergent people? I can see parents being quick to want to eliminate the risks of having to deal with the disabilities autism may bring, without ever considering the gifts it also may bring. How would it negatively impact future technology, science, and medicine to lose future generations of Aspies, for instance?

Currently, a lot of employers’ insurance coverage is tied to ‘wellness programs’ whereby employees must meet certain criteria for discounted coverage, or to keep it at all. I can imagine a future world where parents might be told after prenatal testing, ‘we’ve determined your embryo is carrying the genes for X which will likely result in excessive medical claims, so this needs to be corrected in order for this baby to be covered under your insurance plan.’ Maybe that’s a good thing to prevent things like severe congenital defects that would interfere with quality of life, but where would it stop? Who would make the decision what ‘quality of life’ actually equates?

Synthetic Genetic Shakespeares

CRISPR* gene manipulation has been employed to modify human embryos (1), clinical trials of genetic editing with analogous methods are underway (2) and scientists are bristling over bans on CRISPR research (3).  The fast-evolving events suggest CRISPR gene editing techniques will migrate soon from the laboratory into new areas of clinical research. 

Establishing the Grounds for a Revolution   

Responding specifically to a recent study using human embryos (1), two distinguished scientists are now offering justifications (4) and envisioning practices (5) necessary to enable the ethical testing of novel genetic modification procedures in reproductive medicine.  Has a general consensus to proceed with germline modification been reached in the scientific community?  Dr. George Church offers several arguments to move forward and disputes the notion his scientific peers had ever called for a moratorium noting that specific word was never used in a high-profile editorial outlining their recommendations (6). 

DNA weldNotwithstanding Dr. Church’s stance…

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Fluttering along

I haven't heard anything back from the genetics center yet, so I'm just trying to be patient, which isn't something I'm good at. I've been muddling through at work, trying to get caught up, and bracing myself for the numerous people-y holidays looming ahead in the next couple of months. Did I mention that I... Continue Reading →

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