May is Lupus Awareness Month

iVillage Member
Registered: 10-24-2004
May is Lupus Awareness Month
3
Tue, 05-14-2013 - 7:01pm

Put on Purple  May 17th for lupus awareness and tell people that lupus  is more pervasive and serious than is often thought. May is lupus awareness month, I remind people because I have lupus.

The formal name of my form of lupus is also followed by a slew of other autoimmune syndromes.  It took years to pronounce systemic lupus erythematosus (SLE). My great imator had had me for years being treated for wildly diverse symptom  from problems with mother lymph nodes,  larnagastis, to temperature colour changing fingers and toes and to sudden kidney failure. I dreaded routine test.  A test supposed to read negative would read positive and if you ever had a test that continued to give a false-positive you know what happens to self image.

With systemic lupus erythematosus  every system of the body is at risk. Lupus has gone to my brain and my neverous system, my hair, eyes and starting of arthritis in the fingers and back, I've become a type 1 diabetic  and a cardiac patient. 

You do know someone with lupus.  Put on Purple May 17th.

iVillage Member
Registered: 09-02-2008
Mon, 05-27-2013 - 10:18am

Can you tell me more about this? My husband has a weird rash on his face and other unexplained ailments. I had never heard of this until visiting iVillage.I am now very curious about it.

iVillage Member
Registered: 10-24-2004
Mon, 05-20-2013 - 12:06am

I wish her luck & the best. Tell her not to expect too much improvement at first-Lupus medications can take months to build up and take effect.  Do you know, is her lupus systemic or skin related?  Lupus takes several forms and connectivity and is extremely difficult to diagnose .  The ability of lupus to mimic and imitate is renown.  A person can literally hurt from the top of their head to the soles of the feet, one day all is well but the next  getting out of bed takes 1/2 the day and if dressing is involved a nap may be in order. planning more than a day in advanced took me years and I still have days I have to skip any plans that take me out of the house.  

iVillage Member
Registered: 05-09-2010
Sun, 05-19-2013 - 11:19am

Thank you for stepping out and talking about this. I had never heard of it until my sister in law was diagnosed with Lupus. It has taken quite a while for them to determine what it is she was dealing with but now that we know we are hoping she gets some relief.

Nancy