this isn't just about TV personalities

[editrx]

I know this is a hot topic. I'm sure there are people I know, unawares, who disagree with the scientific concept of using embryonic stem cells for medical research. Heck, I know some members of my own family disagree strongly enough that I wouldn't even dream of bringing up the topic in their company

Comments

[hakeber]

Word. Linked here by ginmar. Will be pimping. For my family it's the lesser Lupus (for which I only have the blood marker for...so far) and adult onset diabetes, which I don't have...yet...and would like to never have.

[editrx]

When you say "lesser" lupus, do you mean discoid (cutaneous) rather than systemic (SLE)? I hate to be the bearer of what could be bad tidings: 10% (which is a low estimate) of discoid patients become systemic, and there's no way to predict it. I'm glad to hear you're not suffering from SLE, as having the ANA titer is going to show in SLE as well as discoid. (Ask me sometime about the ANA test and how inaccurate it is, even with full-blown SLE. I wrote a lot about that in my book on lupus.) I do hope you keep well! (I went and peeked in your LJ when you added me earlier today -- I'm surprised we haven't run into each other before!)

[hakeber]

Actually, I'm willing to bet we have run into each other...a decade or more ago...when I was still doing Worldcons...think knee length brunette hair...and yes, I have heard the ANA titer is not quite so accurate. I will have to ask my mom, and have pointed her here, as she is the one who has had to live with lupus for decades. All I know is she said it wasn't the childhood onset lupus, which is so often deadly, but the one that often onsets during or shortly after pregnancy (did for her) or muchmuch later in life (did for my grandma) and usually let's the sufferer live a very long life... For me, it's been the ever delightful thyroid issues. I just love hormones, yes I do.

[editrx]

There is no childhood onset lupus -- it can and does onset at any time usually after adolescence and most usually at 25-35 or even 40. There is an infant lupus which is a misnomer -- it actually isn't lupus at all, but a discoid form of autoimmune response that looks like the malar rash, and goes away without a recurrence ever again. Many women get lupus coming to the surface (flares) during pregnancy or pregnancy can even clear it up for others.

Was below-elbows brunette hair, here, during Worldcons of ages past, but it's growing out again during this mostly flare-free period, and it's down almost to my elbows again. You may know my spousal unit, Elric.

[loud4singing]

I think it's SLE. I began having joint issues which translates into connective tissue inflamation just after I had my daughter. It took a trip to the Mayo clinic and a diagnosis by their head diagnostition to pick it up because the numbers on the blood work were very low. So they put me on an asprin regumine (and no I can't spell) which worked. Eventually my doctor weaned me off the asprin and the titer numbers are way low. And I have had no symptoms for years. So knock on wood (or something) I should be OK for a long while.

[editrx]

Flare free is a good place to be. The remission periods can go for years and years, and sometimes never reoccur. I hope that's what is in your future! Hurray!

Speaking of the book

[valeriapalmer]

How is the updating coming?

Re: Speaking of the book

[editrx]

Still waiting to hear from the editor about dates and payment(s).

[kaikaku]

Had a spell of ill health a couple of years ago. Found out I have an ANA of 1:640. I've also got high levels of U1-RNP antibodies. The doctors have told me that's nothing, just a "mild positive" and diagnosed me with fibromyalgia. I've been almost entirely fibro pain-free for a year now. O_o

Meanwhile, I've met people who were negative for the ANA test (or 1:80, 1:160, low readings compared to mine) with full blown SLE. Go figure.

I'm waiting for the other shoe to fall, but I'm not sure if I should be.

[editrx]

You don't necessarily have to wait for another shoe to drop, though keeping your stress levels (and therefore cortisol levels) under control will help stave off possible future flares. I'm afraid the ANA levels are something of a snipe hunt with certain doctors. I've been lucky to work with some of the best rheumatologists and rheumatological researchers on the East Coast, and even they agree that ANA levels are not the be-all and end-all of diagnosing RA diseases or inflammatory diseases. There are many other blood tests and factors that need to be taken into consideration, and even they aren't always accurate. Every doctor I know knows of at least one severe RA sufferer (like, the people all twisted up with RA) who have no elevation in their ANA levels or sed rate. Go figure. The "tests" for lupus were created not for diagnostic purposes -- so many doctors forget or even misunderstand that. They were created to weed out people for research purposes. Period.