Monday, July 27, 2009

Scientific American Article on Celiac Disease and Autoimmune Illness

I mentioned a week or so ago that there was an article coming out in Scientific American about celiac disease, and how it can be used as a model for understanding other autoimmune illness. Here's the link - it's worth the read, even if you aren't a celiac.

The US House (and NPF) does good

I got this email today from the National Psoriasis Foundation - cause for celebration! At the bottom of the email is a way to get involved...

Breaking news: The House votes to appropriate $1.5 million for a psoriasis patient registry. Thousands of psoriasis advocates celebrate nationwide.

On Friday, after months of effort by the National Psoriasis Foundation and its network of 55,000 advocates, the U.S. House of Representatives appropriated $1.5 million to begin the first psoriasis patient registry at the Centers for Disease Control and Prevention (CDC).

This is a tremendous victory for everyone with psoriasis. Having a patient registry will begin to answer some important questions including, why are people with psoriasis at higher risk of developing other serious conditions such as diabetes and heart disease?

Over the past several months, members of the Psoriasis Action Network sent more than 3,000 messages to their members of Congress urging them to increase the investment in psoriasis research by the federal government. The cause was elevated on Capitol Hill further by singer LeAnn Rimes' trips to D.C. in March and July to advocate for the $1.5 million appropriation.

In order for the $1.5 million appropriation to go into effect, it must clear a few more hurdles. First, the Senate must approve its version of the funding bill. Then the House and Senate must agree on the appropriations, and lastly the bill is sent to the President to sign.

We need you to keep up the momentum. Contact your member of Congress and ask him or her to support psoriasis legislation. Get started.

Thursday, July 16, 2009

Is Psoriatic Arthritis underdiagnosed?

We all know the numbers - it is estimated that only 10-30% of people with Psoriasis will be diagnosed with Psoriatic Arthritis. But is the low rate of co-incidence because people with P(soriasis) don't usually develop Ps(oriatic) A(rthritis), or because many people with P don't realize they also have PsA? I tend to think the latter, and I think research is starting to back me up.

A recent Canadian research survey on people with Psoriasis (not Psoriatic Arthritis), called the SKIN study (cute) suggests that PsA could be widely underdiagnosed. The article I read about the study states:
The SKIN survey reveals that half of all respondents [with Psoriasis] reported that they had developed joint pain or stiffness, but only 18 per cent of these respondents had ever received a diagnosis of psoriatic arthritis.
Respondents reporting no psoriatic arthritis diagnosis indicated that they experienced stiffness in the knees, shoulders and hips (48 per cent), followed by pain or stiffness in the finger joints (38 per cent) and toe joints (23 per cent).
Underdiagnosis concerns me for two reasons - firstly, of course, I don't want anyone else to experience the pain I experience. But secondly, fewer people diagnosed with PsA means the research community will be less likely to study PsA.

A while back I wrote about the lack of research and basic information about Psoriatic Arthritis, as compared to Rheumatoid Arthritis and Psoriasis. Here's the link.

Here's my point: fewer scholarly articles on PsA will lead doctors to make fewer diagnoses, AND, the lack of PsA diagnoses certainly has an effect on how much research is undertaken.

So if you're out there with P, and think you have PsA, please consider getting a definitive diagnosis.

You know what they say about the squeaky wheel, after all. I'm up for some grease (and I'm not talking another ointment).

Tuesday, July 14, 2009

n=1: Where have I been?

Ok, quickly, sorry, sorry, sorry. Somehow, summer vacation is kicking my tush! I'm having a lovely time home with my kids, (one blessing of having a disease that made me decide not to "work" anymore). But at the end of a day of lunch making, swimming lessons and play-dates I'm wiped, and I have an attention-span of about 10 minutes. Exhaustion and blogging don't mix well!

But I have a lot to write about - first, of course, about celebrities (Michael and Lupus, Cameron Diaz and Psoriasis, and our home-girl LeAnn in D.C.). In the case of the first two, I wonder: is any publicity good publicity when it comes to autoimmune disease?

And I also have been following all the recent developments in Celiac Disease (my other autoimmune condition). Scientists have recently demonstrated that it is on the rise, and Jen Cafferty at the reports that the August edition of Scientific American will include some significant findings about Celiac Disease that relate to other autoimmune diseases. Dr. Alessio Fassano states, (as cited in Cafferty's article), that:
“Celiac disease provides an enormously valuable model for understanding autoimmune disorders because it is the only example where the addition or removal of a simple environmental component, gluten, can turn the disease process on and off.”
I'll work on posting some more on these topics, and others, as soon as my hair dries from the pool. Meanwhile, I'm working on a new motto: Summer parenting with an autoimmune disease - the toughest job you'll ever love.

Friday, July 3, 2009

Acetaminophen and your liver (and your pain)

I'm sure by now everyone has seen that a federal advisory panel advised a ban on Percocet and Vicodin - both drugs that combine Acetaminophen and opiates. Here's a link to a NYT article. They made this recommendation because:
High doses of acetaminophen are a leading cause of liver damage, and the panel noted that patients who take Percocet and Vicodin for long periods often need higher and higher doses to achieve the same effect.
The panel was only an advisory board to the FDA - the FDA has yet to make a decision, btw.

It is critically important to those of us who live with chronic pain to understand this potential ban - not necessarily because we are all on Vicodin and Percoset, but because of the reasons the panel wants to ban them.

The concern is that people taking combination drugs don't understand that they are getting fairly high doses of acetaminophen in each Percoset or Vicadin pill, and while they are following the prescribed doses for these painkillers, they might also take a Tylenol too (which is acetaminophen) as well, thinking "well, it's an over the counter drug... it can go with this narcotic". Worse, some people think that if the doctor says take 2, it's safe to take 4. I fall into this second category. I tend to think that doctors under prescribe. I rarely take more than is on the bottle, but when I have, I don't worry.

We should all worry. Here's the money quote:
While the medicine is effective in treating headaches and reducing fevers, even recommended doses can cause liver damage in some people. And more than 400 people die and 42,000 are hospitalized every year in the United States from overdoses.
Please, just think before you pop a pill.