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I saw this advertisement in my Sunday paper a couple of weeks ago:

I don’t usually buy things from advertisements in my Sunday paper. But $12.97! Free Shipping!! Pain-free?!! I had to try them. (I actually bought them off the web, though, at www.dreamproductscatalog.com– does anyone actually cut out their address information and mail it in anymore? Apparently someone still must, to pay for all these ads.)

They looked like when I tried them on: 

They were pretty comfortable, although seemed somewhat cheaply made (not sure what I was expecting for $12.95). They also didn’t match very well with my particular skin tone, and I’m not sure what anti-arthritis properties they could possible have. I kept them on for a few hours and they did keep my hands warm and comfortable while I was working on the computer.  I don’t think I would wear them to work, though, even though they might make my hands warmer there. I felt like I would be very conspicuous.  I would probably wear something that was closer in color to my hands and was less cheaply made.  Other scleroderma patients have recommended “wristies“, fingerless gloves that come in a wide range of colors. Some even have a pouch for a hot-hands. I think I’ll try those next.

Dream Products, Inc. also has a number of other products, aimed at an older segment of the population. Browsing through the website reminded me of the catalogs that my grandmother used to get. 

I recently came across a very interesting paper published in the journal Arthritis and Rheumatism (found online here) from a group in London who have a developed a mouse model of lung injury in scleroderma.  Basically, the scientists made a mouse with abnormal transforming growth factor B (TGFB), a protein which helps regulate inflammation and which is found to be abnormally elevated in skin and lung biopsies of scleroderma patients. These mice sometimes developed lung injury which looks, under the microscope, similar the the type of lung fibrosis seen in scleroderma patients.   The researchers found that by injecting the lungs of these abnormal mice with just saline, they were able to produce lung injury consistently. In normal mice, the saline caused no damage to the lungs and they had to inject a very caustic substance (bleomycin) to cause any lung damage.

Mice, of course, are not humans, and probably lung damage in scleroderma is more complicated that just the overproduction of TGFB.  It is still exciting, though, that a mouse model of lung injury in scleroderma now exists and may potential lead to new and better treatments in the future.  Doctors are not able to predict yet which patients will get lung involvement. It is also interesting to note that not all the experimental mice developed lung damage, suggesting that there may be some injury in scleroderma patients that causes them to develop lung damage. 

Reference: Hoyles RK et al, “Fibroblast-Specific Perturbation of Transforming Growth Facter B Signaling Provides Insight Into Potential Pathogenic Mechanisms of Scleroderma-Associated Lung Fibrosis: Exaggerated Response to Alveolar Injury in a Novel Mouse Model,” Arthritis & Rheumatism, 58 (4), April 2008, 1175-1188.

Annie and Tom, from Chicago, are competing against four other couples in this year’s Today Show “Race to the Wedding.” Annie was diagnosed with lupus when she was 17 and, according to the email sent by The Lupus Foundation of America  she initially thought that she would never find true love. But she met Tom, who recently asked her to marry him. You can read about their story at http://www.annietom.com.  I think it’s great that a cute, young woman with lupus is getting national exposure and I’m rooting for them!

Here’s Annie’s discussion of her lupus on their website:

Greetings Friends! I’ve received several questions about Lupus and figured I’d tackle them here with a little Annie spunk. Like I said in our video, I was diagnosed at the age of 17 after years of chronic illness. Throughout high school I dealt with a serious head injury, vasovagal syncope and what I like to call a “lazy immune system.” Finally, after dealing with an unbearable amount of fatigue and pain, a doctor suggested I visit a rheumatologist, who determined I had Systemic Lupus Erythematosus. Yeah, that’s a mouthful, so just stick to saying Lupus or SLE. Eight years later, I’ve learned to deal with the fatigue, pain, infections that won’t quit and overall annoyance of dealing with chronic illness. I still have bad days (and REALLY bad days), but luckily, with the support of Mas (Tom) and my family, I’ve had the opportunity to create a life where I feel like I hold the reigns over my disease and even managed to backpack around the world. Sure, I took a whole lotta naps and spent quite a few days curled up in a bed at a random European hostel, but still, Lupus won’t stop me from exploring life! I look forward to competing on Today Throws a Wedding and showing what a chick with SLE can do!

You can vote for Annie and Tom at:
http://today.msnbc.msn.com/id/24596237/


I’m currently making my way through a new book that I received from my father entitled The Autoimmune Epidemic, written by Donna Jackson Nakazawa (amazon.com link here).

The book is written by a journalist who suffers from an autoimmune disease known as Guillain-Barré syndrome which causes progressive paralysis.  Her own struggles with this disease prompted her to write a book about the dramatic increase in the spectrum of autoimmune diseases, including scleroderma.  Approximately 23.5 million americans suffer from autoimmune diseases, a staggering 1 in 9 women– which makes it more likely that you will suffer from an autoimmune disease of some type than that you will have a heart attack or cancer, and this is a 3-fold increase since the 1950s.

Nakazawa’s theory is that the increase in autoimmunity that has been observed is due directly to the increase in toxins in the environment. In the forward to her book, Dr. Kerr (a neurologist at Johns Hopkins University specializing in transverse myelitis) discusses studies in which mice were injected with chemicals found in our environment and subsequently developed lupus-like conditions.

I am initially skeptical about this premise, but I’d like to keep an open mind. My father, who gave me this book recently, has always thought that my stressful career choices cause me to develop scleroderma, and he greeted my initial diagnosis with a list of different fruit and vegetable juices to take throughout the day. I recoiled from the presumption that this disease was somehow my fault.  But there must be an explanation for the explosion of autoimmune disease, and I’d like to see what evidence Nakazawa presents.  

The quote that opens the book is from the NIH:

Autoimmune disease: Normally the immune system’s army of white blood cells helps protect the body from harmful substances, called antigens.  Examples of antigens include bacteria, viruses and toxins… But in patients with an autoimmune disorder, the immune system can’t tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues.

I’ll keep you updated as I make my way through the book. Anyone want to read along with me?

The major problem that I have had with scleroderma has always been the Raynaud’s phenomenon.  I began having Raynaud’s long before I was diagnosed with scleroderma, at the age of 15. I remember that I was in high school on a cold, wet November day, and my hands turned completely white. My best friend and I went to the school nurse to figure out what was wrong; she told me that it was pretty common, and not to worry about it.   From then on my hands would occasionally turn white when I got really cold, if I was skiing or hiking. It wasn’t until years later, after I had already finished medical school and was in training to become a plastic surgeon, that I was diagnosed with scleroderma. From talking with other people, often the first sign of a systemic illness is raynauds. I think that most doctors do not take raynauds very seriously, especially in young women.

I have recently stumbled upon a web-based resource for people with raynauds, both primary (without an underlying cause) and secondary (with an underlying disease causing the process.)  The web site is: www.raynauds.org.  I especially have enjoyed looking through– and adding my own comments to– the discussion boards.  And they have a list of products that are discounted for people who are suffering from raynauds.

Access my description of raynauds here.


I am always looking for a good product to cover my telangectasias (see my post about my struggles with vanity here) and I recently saw an article in the Chicago Magazine about the two woman who founded the Amazing Cosmetics Company, right here in Chicago. Their amazing concealer is prized by celebrity makeup artists to cover their client’s most stubborn facial flaws.  I bought a tube on Sephora.com and have been impressed with the results. The color blended nicely with my skin, and didn’t leave a cakey residue.

Amazing Concealer is also recommended to cover roseacea and other skin discolorations.

 

What is Bluefingers?

Bluefingers is a blog devoted to living with Scleroderma, a progressive autoimmune disease that does not have a cure. I hope to educate people about the disease and provide hope for those who are living with the disease.

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