Luck Fupus

A lupus blog…

Let’s hear it for the boy(s)!

If you frequent my blog, you know that the titles of all the posts are song lyrics, an idea I shamelessly stole from my sister, Brie. Writing was never my strong suit (science nerd since birth, here) and the thought of trying to come up with a pithy title for each post frightened me. Plus, having “Go fuck yourself, lupus” for every single name would get pretty repetitive.

I digress.

Sometimes I’ll hear a song, write down a lyric hoping I can one day incorporate into my blog. I’ve had “Let’s hear it for the boy,” on my list for awhile now, so you can imagine my excitement when I realized I had a pertinent subject matter.

Lupus is publicized as a woman’s disease. According to the Lupus Research Institute (or any reputable website), more than 90% of lupus sufferers are women, mostly young women ages 15-44, in their childbearing years. Though more prevalent in women,  the truth is, men can have lupus, too.  Hashtag the more you know.

Note: due to the sex hormone component that predisposes women to lupus, the ratio of women to men is 9:1. In children, before the development of sex hormones, the gender ratio is not as pronounced as it is to adults. LRI

In my 8 years with the disease, I have only met one man who lives with lupus. Just as with breast cancer, the male lupus population is far under represented. If there are an estimated 1.5 million Americans with lupus, approximately 150,000 men in the US have lupus.

Remember Batman Forever circa 1995? Yeah, I try to forget it too, Val Kilmer sucked. Michael Keaton all the way for this girl. Even though the movie was tolerable, at best, the soundtrack was kick ass; U2, Mazzy Star, The Offspring, Method Man… so many great tunes from my day came from that soundtrack.

However, the one I most often remember is Kiss From A Rose by Seal. Oh God, I can close my eyes and picture myself in my parents’ living room during the summer with MTV on (back when they played, you know, actual music), watching that video, standing in front of a fan imitating all the dramatic hand gestures Seal made (but dreaming I was Alicia Silverstone when Chris O’Donnell kissed her… have mercy), and singing along at the top of my lungs.

Did anyone else often wonder what all those scars on his face were from? Oh c’mon, you know you did. Since The Googles didn’t exist back in ’95, my imagination ran wild. Was he in a house fire as a child? Was there a high school chemistry experiment gone wrong? Did he get mauled by a bear?

It turns his scars were caused by DLE, discoid lupus erythematosus, a form of lupus that that specifically affects the skin above the neck, causing disk-shaped lesions on the skin. Without swift and proper treatment, the chronic disease can be extremely disfiguring. He developed the condition as a young teen, and the inflammation was so severe it led to permanent scarring and hair loss.

Note: In discoid lupus, if lesions develop on the scalp, the hair loss that occurs is permanent. In systemic lupus (the kind I have), hair loss is a common sign of a flare, but is not permanent. 10% of those with DLE will go on to develop SLE, but, there is a possibility that in those people they already had SLE and discoid lesions were the first identifiable symptom.

You probably remember hearing in the news a few years ago that Nick Cannon was hospitalized with renal issues, and received a diagnosis of lupus nephritis, where inflammation occurs in the kidneys. The damage caused renal failure, requiring dialysis. Not long after, he was once again hospitalized for multiple pulmonary emboli, blood clots in the lungs which many with lupus are at risk for developing. Since that time, he’s been vocal with sharing his story and is involved with the Lupus Foundation of America.

I don’t know why the video embedded so fucking big, but this is an interview with Nick Cannon on Good Morning America not long after his second hospitalization. I love him!

Last Friday, May 10th was Put On Purple Day for Lupus awareness! Usually I spend the weeks prior posting on ALLLLL the social medias to wear purple, but this year I was traveling so often that I didn’t get to as much as I would have liked. I  bug the shit out of Tweet famous people, hoping they’ll whomever manages their Twitter account sees the Tweet from lil ole’ me, then tells the stylist to dress Angelina and Brad in purple.

I always Tweet the local news stations, and throughout the day I’ll see a spattering of purple on TV, and it makes my day. I’ve always been an NBC girl as that’s what we grew up watching, and everyone knows my favorite meteorologist is NBC10 Philadelphia’s Bill Henley. Maybe it’s the cute-quirky science nerd aspect, because I spend my mornings watching him on the news, or maybe because it seems that he’s nice in real-life and not a total bag of dicks like some of the other local anchors I’ve met.

For the past 4 years, and counting, he’s come through and worn purple on-air for me- most likely because he knows I leave him the hell alone for the other 11 months of the year. Regardless of why he chooses to, the small gesture makes me happy and raises awareness for this asshole of a disease that has taken away my nursing career, my ability to have babies, and so much more.

You hear that lupus? You’re an asshole.

I bet your meteorologist doesn't look this handsome in purple. Back off ladies, he's mine. (I kid, I kid)

I bet your meteorologist doesn’t look this handsome in purple.
Back off ladies, he’s mine. (I kid, I kid.)

As I mentioned above, I only personally know one man who lives with lupus, Mark, who is the leader of my local lupus support group. For the sake of this post I should have gotten some input from him, but that didn’t dawn on me until this very moment. Sorry Mark!

Just because I don’t know any men who have lupus, doesn’t mean I don’t know any affected personally by the disease. Several weeks ago I “met” Stephen Hinkle, a Florida man whose father passed away from complications of lupus. After his father’s death, Stephen took it upon himself to start raising awareness for lupus, emphasizing that it’s not just a “women’s illness.”

Before I was born, my father had lupus so this was all I knew as a son until he passed away. Two of his biggest frustrations: the average person assuming it was a “female-only” disease and theconstant stares he got while wearing “protection” (hat, sunglasses, long sleeves, and jeans) outdoors in South Florida.

I can remember accompanying him to the doctors and hospitals for treatments and surgeries many times only to see him return home and deal with bouts of pain and chronic fatigue.

Although lupus affected his health and quality of life as a person, it never compromised him as a father. My dad had the same attributes as all of the other good fathers: compassionate and patient. He took me out to eat, see movies, and go shopping; attended my baseball and football games; and was always willing and able to listen to me about life in general.

Lastly, he taught me to be kind and compassionate so I created and 23 months ago.

I lift heavy weights in non-profit events and wear charity t-shirts for local and global awareness.

Thanks, Dad!
Stephen Hinkel
Boca Raton, Florida

Stephen has spent much of this month going around and raising lupus awareness, even getting a few local Florida celebs to Put On Purple!

Put On Purple to kick some Lupus ass!

Put On Purple to kick some Lupus ass!

Go check out Stephen’s sites.

So what did we learn today, kids?

Men get lupus, too!

Love you all <3

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