loopy love
Diagnosed at 31

What do you want others to know about lupus?

Lupus is a life long disease. Always listen to your body, so many doctors disregaurd this disease or pass it off for something else. Get a rhematologist that listens to you. Just because they are doctors they dont have to call the shots. Most of all educate yourself knowledge is power with this disease. Try to stay positive

Why is lupus a cruel mystery to you?

My story is complicated. I was diagnosed at 31 after my legs were so sore i could hardly walk and my joints were hurts so bad my family dr. did bw and it showed positive ana and double strand dna pretty standard for people like us. So anyway i went to a rhemotologist. Iv been on all different drugs including chemo like drugs bc the joint pain was getting so bad amd i kept gettiing worse so weak ect then i have got phenomonia a few times a bunch of utis and kidney ifections then a bomb shell a brain tumor that neoro surgeon has ever seen before, going to see penn this month to see if the tumor has changed. Iv also had platers fasities in both feet this year WOW now that iv got all that out the interesting bit is that my 15 year old daughter has a pace maker amd has since she was 4. She has second degree heart block that we have just figured out was from me having lupus thats how she got the block they asked me when she was sick if i had lupus i was young and i had no idea what it was and how this disease would effect me and my beautiful daughter and my entire family. My mom was diagnosed this fall with lupus like symtoms so this is my personal story all sad by true lets find a cure.!!!!!!!!!!!

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