My Life Works Today!

There is a place between who you were and who you need to be -- that place is here.  

 

 

We have recently created a local network designed to be a link for individuals who are either just starting out or are already veterans in living with lupus.  (Lupus is a chronic autoimmune disease where our natural defense mechanism - our immune system - can no longer identify what is "us" and what is "foreign" bacteria, viruses or other antigens).  This confusion leads our systems to begin making antibodies designed to attack our own cells and tissues ("self" antigens) as an effort to do its defense job, but the results lead to complexes (a destructive cocktail of our auto-antibodies and our "self") that inflame and destroy our bodies.  

Since we are talking about our immune systems, tissues and cells, that tells you that lupus can potentially affect ANY part of you at any given moment. 

 

For the most part, this disease affects more women than men - research is pointing to hormonal factors- but it is still an issue for men, sometimes affecting them more severely. There has also been a great deal of research in the areas of genetics and environmental factors geared at understanding how these might trigger our systems to go haywire. The bottom-line is that there is currently no cure for lupus.  As you begin to learn more from the many resources (books, internet, organizations), you will find that there is a great deal of variation in what lupus means from one person to the next. That is one of the main messages MLWT is putting out there to those of us in the PNW:  

 

It's your lupus. It's your body, your medical team, your network - - your life.  We know that we with lupus are generally very strong and private about our illness, mainly due to how inconsistent and less visible it is to those around us.  

 

Our goal here is to provide not only a network of local and community-recommended resources to learn more about living with lupus, but also a community of peers, professionals and people we can share our lives with here in Oregon and SW Washington.  

 

.  MLWT offers opportunities to connect with you at any time during your health journey - as you begin to seek a firm diagnosis, just starting out after diagnosis or have been at it for awhile.  These offerings include:  

 

1. *Workshops and Presentations on target strategies for self-management  

2. *A Blog focusing on living with lupus here in the PNW  

3. *A growing source for links to information, both locally and web-based  

4. *An Events Calendar open to the MLWT to post local happening's to participate in

5.  *A Bulletin Board/Forum where you will find a variety of topics, announcements, potential 'partners-in-crime', educational and support resources all with one main focus in mind:

 

As ominous as lupus sounds, research and medical care have greatly improved the outlook for anyone who has been diagnosed these days.  "MLWT and its community are designed to act as a bridge to opportunities in self-determination for those with lupus, their familes and friends all with one focus in mind.

 

"The best way to inform others about Lupus, is to live with it well"