Sjogren's Syndrome is Common?

I sometimes mention Sjogren's syndrome, the main autoimmune syndrome I have. Sjogren's affects the moisture producing glands in the body, the classic symptoms are dry eyes and dry mouth. For some people, that is all they have, others may have a variety of other symptoms, but not have dry eyes or mouth at all. Some people are able to continue on with all their roles in life, others become completely disabled. There have been estimates that between 1-3% of the population of the US is affected by Sjogren's. That means that this disease, which so few people have heard of, and until recently was thought to be rare, is actually pretty common.

That means that there are many, many, MANY people out there who have Sjogren's syndrome, and don't know it. For some, it is because their symptoms are mild, or they blend in with something else they have, or they figure what they feel is just a normal part of aging. Then there are all the others. The ones who know there is something wrong, and are searching for a diagnosis. On average, it takes 5-7 years for people with Sjogren's to get an accurate diagnosis. People are often told they have lupus, or rheumatoid arthritis, both of which have some overlaps with Sjogren's. There is a blood test, but not everyone with Sjogren's tests positive. I could go on and on, but you get the idea. 

Unfortunately, treatment can be haphazard, or even inappropriate if you don't have an accurate diagnosis.Also, having a diagnosis is beneficial psychologically, in that you feel 'vindicated', that you didn't imagine the symptoms, they weren't all in your head. 

On June 1st, our Northeast Ohio Sjogren's Syndrome Support Group is having a Walkabout- a short walk, since many of us, (including me, these days) are limited in how much we can walk.We are collecting money for the Sjogren's Syndrome Foundation, which will go to sponsor research grants for researchers studying Sjogren's syndrome, looking to understand it better, and for better ways to diagnose and treat it. The funding will also go to educating the public as well as the medical community about Sjogren's, so people will be diagnosed more quickly in the future.

Please go to my Firstgiving page and make a donation to help us with our mission. My tear ducts and salivary glands thank you, as does the rest of me, and all the other people affected by Sjogren's.

Walk For What Ails You

Our local Akron Area (Ohio) Sjogren's Syndrome Support Group had a 'walkabout' on Sunday, June 3, 2012. One purpose of the walkabout was to raise funds for the Sjogren's Syndrome Foundation (SSF), which is then used to fund awareness campaigns to educate the public and medical communities about Sjogren's Syndrome, and to fund research to find better treatments. Another purpose of the walkabout was that all of those participating talked to family and friends about Sjogren's, and that in itself increased awareness. Besides that, it is a fun event, a chance for us to get together in the fresh air and take a walk.
Sjogren's Syndrome is defined by the SSF as "a chronic autoimmune inflammatory disease in which moisture-producing glands are damaged, significantly decreasing the quantity and quality of saliva and tears." It may cause dysfunction in other organs and systems, and often includes extreme fatigue and joint pain. Sjogren's is one of the most prevalent autoimmune disorders, striking as many as 4,000,000 Americans.
Since pain and fatigue are frequent symptoms of Sjogren's, the walkabouts are short. There are options for participation for anyone, including working at the registration or snack tables, cheering others on, and doing as much of the route as they are able.
If you are a regular reader here, you know of my struggle lately with plantar fasciitis, achilles tendinitis, and hip pain. I walked the full route, twice around a short circuit, slowly but surely. My husband and youngest son, home briefly between college and grad school, walked with me. I raised over $300 myself, and the event raised over $6ooo total. While I was collecting money for Sjogren's, a couple of friends were collecting money for cancer walks they were participating in. It seems that more and more illnesses are getting involved in the 'walkathon' business. This is a fun way to help fund research and education for whatever ails you. Check out local support groups, look online, find out if there is some kind of event for your illness, and if not, start one. You don't have to be a big, national organization. Our local newspaper frequently has little blurbs about a person or family sponsoring a spaghetti dinner, or a walk, or some other event to raise funds for something. You can even just get a bunch of friends together to raise funds to send to whatever cause you choose. Keep in mind that if you do not have a known cause behind you, people may be reluctant to donate. Be clear about where the money will be going.
Happy walking!  

Walk in the Sun

Yesterday was a gift for those of us in Northeast Ohio.  We had sunshine, and near 60 degrees F.  We have actually had several such days this year, an unusual number for winter in this part of the world.  I took a 40 minute walk outside, and came home with a smile on my face, and energy to spare.  What a great combination- walking and sunshine.  Our bodies need both.  
Sunshine promotes the production of vitamin D, which is sometimes referred to as a hormone, because of all the positive influences it has in our bodies.  Besides that, people tend to smile more on sunny days, and I sure noticed yesterday that people were friendlier and more social wherever I went.   I love the feel of the sun on my skin on days like this.  (Not so much in the middle of summer.) 
There have been hordes of research lately on how good walking is for the body.  It gives your heart, lungs, muscles, bones and most other parts of you a workout, and helps to improve your ability to function. It also feels good to move and to stretch.  Recent research has shown that exercise is good for people with Fibromyalgia.  It may hurt to move initially, but over time, exercise decreases pain and increases energy.  The key is to start near but not at your limit of what you can do comfortably, and to increase very slowly, perhaps adding on a little bit more each week of whatever you do to exercise.
I have become more active over the past year, doing water walking, Pilates, and on nice days, walking or hiking outside.  I have more energy than I have had in years, and fatigue hits me less often.  My pain has improved some, but not as noticeably.  I seem to get grumpy less often, too.
Sunshine and a walk is a combination I highly recommend.  Don't overdo either one, though.  There is such a thing as too much of a good thing.