27th Annual Maryland Lupus Summit

The biggest lupus event of the year is here! On Saturday, September 13, 2014, the Lupus Foundation will present the 27th annual Lupus Summit for Maryland, in Baltimore. This event features a day of lectures, activities, and information for lupus patients and their families. The summit is free but registration is required; click here for details. The renowned Dr. Michelle Petri will be speaking first (at 9:00 am) and I would encourage anyone in Maryland interested in this event not to miss her talk on treatments for lupus.

For those who do not know, Dr. Petri is one of the leading lupus rheumatologists in the world. She is a Professor of Medicine at Johns Hopkins University School of Medicine. She attended Harvard University for Medical School and currently serves as the Director of Johns Hopkins Lupus Center. At the Lupus Center she leads the research to better understand the relationship between systemic lupus erythematosus and morbidity and mortality. She published a study which linked vitamin D deficiency to lupus  patients which effectively determined all lupus patients must take vitamin D supplements, usually for the rest of their life. For more information on this study, click here.

In addition to the likes of Dr. Petri, the event will also host a series of other sessions which include but aren’t limited to: lupus and the skin, lupus and men, lifestyle and lupus, and tai chi, to name a few. Lunch will also be served but you need to pre-order when you register. The cost for the box lunch is $10.00. The deadline to order the box lunch is September 10, 2014. Pre-order the lunch here. Alternatively, you can  bring a bagged lunch; however, buying lunch at the event is not an option.

Registration is from 8:00-8:30 am

Summit is from 9:00 – 3:o0 pm

I hope to see you there!

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Discoid Lupus & Kids

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Children are awesome. They say whatever it is they’re thinking, whether you ask or not, and they’re usually pretty positive overall. So why jade all that positive goodness with talk of chronic illnesses? Because while I may not know everything, I do know that eventually children ask. Simple as that. If you think they won’t, well, then you live in an alternate universe!

All joking aside, it’s something you’re going to have to do at some point so it’s best to be ready. I say this as someone who does not know the meaning of preparation. I typically wing it, because I’ve explained to so many people throughout my life what’s on my face. Hence my blog’s namesake.

When my four-year old niece asked me, I was not ready for how she would react…

We’re laying down on an air mattress because I was able to convince my sister that to let me babysit since I’m never in California. After she discovered the joys of memory foam pillow-top and calmed down a bit we were resting on the heavenly clouds facing each other. I could feel her tiny breath on my face and remember being very sleepy and hoping that if I stopped moving and closed my eyes, she would too. Wrong.

She looked at me and in the most innocent way, asked, “Auntie, what’s that?” while pointing and touching one of my scars. “Aunty has lupus. Lupus is like a cold for the skin. My skin was sick and this is what happened. Now, I have these as reminders, but don’t worry, I am not in any pain.”

This bundle of joy inched even closer to me, and snuggled up. She kissed my face and I stared, dumbfounded. I’ve had cousins tell me, “we think you’re pretty but would be prettier without lupus.” I’m not delusional about how children perceive things. It’s hard to actually put into words the series of mini-actions that took place after I explained to her what lupus is, the best way I thought she could understand. I would be lying if I didn’t say I was surprised, after all these years, after all I’ve been through. The moment we shared was filled with love and understanding. How a four-year old was able to connect with me on a level most adults cannot is beyond my comprehension but I am eternally grateful for her. She’s my sunshine and no disease could ever take that away from me. If anything, I think lupus has actually made us stronger.

Still, while I’m no expert I think if a child asks us a question we should do our best to answer. You might be surprised by how well they handle what you say. It might even make you tear up–like me, cause I’m a huge baby. At some point I’ll have this talk with kids I will hopefully have–I can only hope it goes as smoothly and is as touching as this was.

Happy Monday everyone!