Saturday, September 13, 2008

Our Autoimmune Family

Image found here. 
You've gotta love family. Through good times and bad, arguments and celebrations, the undeniable bond remains. Whether we like it or not, we are lifetime members.

Yesterday, my post listed several members of the autoimmune family. Like all clans, the autoimmune family is large and has some unique members. And also like biological families, anyone with an autoimmune disease has a pedigree which is undeniable. It is what it is, love it or hate it. 

There are 80 conditions in our autoimmune family tree, according to MedlinePlus. The American Autoimmune Related Disease Association says there may be as many as 100, and as many as 40 additional diseases may have an autoimmune basis. The NIH estimates that in the United States alone, there is 23.5 million people dealing with autoimmune disease. That's a big family. 

As members of this large and unique family, we have responsibilities. No, not washing the dishes or taking out the trash, but responsibilities to help each other. I believe that supporting and educating each other are the most important things that we can do to help our brethren. 

Educating and sharing our experiences with each other has become increasingly easy with an ever growing computer and internet access for most of us. When attending support groups in person is difficult due to limited mobility or remote living locations, online forums, chat sessions, and seminars provide an opportunity to connect with those that can truly appreciate the unique challenges that each of these diseases provide. These forums and online contacts can provide a way to offer encouragement, support, and assistance in making sense of  the enormous amount of confusing information that can result from one google search experience. 

Last spring, I had an opportunity to attend a national conference sponsored by the Sjogren's Syndrome Foundation. While online contact and information is invaluable, the opportunity to speak face-to-face with other Sjogren's family members was an experience which provided a whole different dimension to personal support. As we guzzled innumerable bottles of water, dripped eye drops, and sucked on hard candy, we developed a camaraderie that left me wanting to link arms and sing Kumbaya by the last session. If at all possible, I plan on attending future conferences not only to learn new things but also to be surrounded by folks who understand Sjogren's and it's challenges. Non-autoimmune people, while being understanding and supportive, will never truly understand. Fellow conference attendees really do "get it". 

I urge my AI family members to connect with each other, either through in-person support groups, attending conferences, or by participating in online forums. Share your experiences. Ask questions. Be active not only in your own experience with AI but active in being a resource for others. 

Someday, we should have a gigantic autoimmune family reunion. You will recognize me as the weird aunt that shows up at all family reunions. Oh, and it will definitely be a pot-luck. Bring a hot dish. 

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