11 posts from June, 2013

The “Are You Sleeping?” campaign kick off. How the PatientsLikeMe Team sleeps

Posted June 30th, 2013 by

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Sleep and its impact on our lives is one of the hottest topics on PatientsLikeMe. It’s one reason why, over the next several months, PatientsLikeMe is going to be taking a deeper look at your sleep experiences and how they affect your overall health. So, we want to know – Are you sleeping? Keep an eye out for conversations about sleep in the forums, insomnia topics in the newsletter and research surveys that will help uncover more about sleep (or lack thereof). We’ll take a look at everything you’re sharing over the next few months and tell you more about what we’re seeing (stay tuned!) There are many things that can impact our sleep, so let’s get the conversation going and start catching some more Zzzzz’s.

To kick off our “Are You Sleeping?” campaign, we recently went ‘under the covers’ with this PatientsLikeMe staff quick poll. Sixty one of us completed it and below are highlights of what we found about our teams’ own sleep. How do we compare to your experiences?

How well are you sleeping?
All in all, we found that the majority (89%) of our staffers are sleeping OK or better.

How well are you sleeping?

 

On average, how much sleep do you get every night?
Although our Zzzz’s are OK, 61% of us are only getting between 5-7 hours a night. (And according the Center for Disease Control and Prevention that’s way less than the recommended 7-9 hours for adults.)

How many hours?

 

Do you have a problem…
For those who fessed up to having sleep troubles, more people said it’s staying asleep that’s the issue (77%).  (While we didn’t do hard research on this, we can anecdotally share that many people around the office have toddlers and infants at home, so that could be a contributing factor.)

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What have you tried to help you fall asleep?
When it comes to needing sleep aids to catch those Zzzz’s, you’ll see more of our employees turning to solutions like books (60%), lifestyle changes (50%), TV (31%), relaxation (31%) and sex (33%). Some of us try over-the-counter interventions (22%), prescriptions (16%) and homeopathic techniques (14%). (We also asked what’s least helpful and found ‘watching TV’ tops that list.)

Tried to fall asleep

 

Since joining the PatientsLikeMe team, do you…
And last but not least, since joining the PatientsLikeMe team, only a handful have had changes in their sleep with 13 people saying they sleep less (23%) and, surprisingly, 5 (8%)  now sleep more. (Obviously, those 5 people just don’t have enough to do. We’ll fix that.)

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How does your sleep compare to ours? Update your symptoms, including insomnia, on your PatientsLikeMe profile. And here’s a glance at what some of your fellow community members are saying on the “How the PatientsLikeMe Team sleeps” forum thread.

  • “My sleep is practically non existent, if I get a full hour of unbroken sleep I count that as a good sleep.”
  • “I sleep maybe 3-4 hours a night. I get up & read a little & then go back to sleep for about another 3-4 hours. Very rarely do I sleep 5 hours at a time.”
  • “My problem is I am extremely tired all day long.  I do sleep like 5-6 hours in bed sometimes, wake up, and go sit in the recliner.”

Not a PatientsLikeMe member? Not a problem. Start your own profile for free and tell us… are you sleeping?

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“The real me” An interview with psoriasis patient and PatientsLikeMe member Maria

Posted June 27th, 2013 by

Here at PatientsLikeMe, we’re continuing to talk with people who are sharing their health experiences to help raise awareness about their conditions and change medicine for good. For our latest interview, we spoke with Maria who has been living with psoriasis since age 14. Some of you may know her on PatientsLikeMe as pinkdragonrider. She recently took some time to talk with us about life growing up, treatments she uses and what she thinks those who don’t have psoriasis should know.

Maria

On your PatientsLikeMe profile, you say you’ve had psoriasis since age 14, with worsening symptoms in your 20’s. Did you experience any stigmas growing up with psoriasis?
I consider myself very lucky in that my psoriasis was confined to my scalp until my early 20s. Growing up, I thought I had the worst, most embarrassing case of dandruff, and itchy flaky skin behind my ears. Thankfully, my hair covered most of my lesions. I was not formally (or correctly) diagnosed until I was 23. Only looking back at my childhood do I know realize that I had psoriasis since my early teens. After I graduated from college, which was around the time I had a critical health crisis and suddenly and violently developed irritable bowel syndrome (IBS), the first plaques on my legs and arms began to appear. Ashamed and embarrassed by my skin, I wore long pants and long sleeves as close to year-round as possible. When I did show my skin, people stared, pointed at me, children asked rude questions very loudly, and I was asked to leave a public pool, because someone said I had leprosy. That was the single-most humiliating experience of my life and I am thankful that it has only happened once.

I am glad that psoriasis commercials appear on TV and my hero is Carrie Dee English. Now that a gorgeous woman has the condition and is not afraid to be photographed when she is flaring very badly, I am much less likely to hide my skin. Sometimes people stare, but they generally do not say anything within earshot and usually don’t point in my direction. So, social situations are less stressful for me now. I strongly prefer to swim or use hot tubs at my friends and family’s houses, though, because they know about my condition and never give me a hard time about my skin. They see the real me and I love them very much for the confidence they continue to instill in me.

Tea Tree Oil Ultra-Moisturizing Body Wash with Olive Oil and Acai Extract is a favorite of yours and seems to be working well. Natural remedies are a big topic of discussion on PatientsLikeMe. What other remedies did you try before finding what works? Any biologics?
When I was first diagnosed, I was prescribed several different topical and oral treatments such as Dovonex, Clobetasol, Nizoral shampoo, and oral steroids. I hated using topical medications, because my BSA was so high that it took an hour or longer to put creams, lotions, or ointments on every lesion and most of the treatments would stain my clothes, towels, and sheets or would thin my skin. The ointments were the worst for staining and feeling greasy or becoming runny with body heat. So, now I refuse to use any topicals, because they are such a waste of my time and money (they are expensive even with insurance) and they generally do not work for me.

As for biologics, I have never tried them and I do not plan to, because I am absolutely terrified of the side effects. I always read the complete list of possible side effects for any drug before using it. I do realize that some of the more horrific side effects are unlikely, but knowing that they are possible is scary enough for me to say, “No way!” For me, having clear skin is not worth risking tuberculosis, cancer, blood disorders, seizures, multiple sclerosis and other issues. So, until there are much safer and more effective products from which to choose, I will stick to my natural and home remedies, thank you very much.

What’s it been like to connect with others living with psoriasis on PatientsLikeMe?
Reading other peoples’ stories and experiences has saved me money, disappointment, and time by knowing what has worked most consistently for others and which medications have been mostly wastes of time, effort, and money. Also, it helps to know that there are others out there who know exactly what I am going through and where I am coming from.

We usually ask our interviewees what they think other psoriasis patients should know. But I wanted to ask you instead, what do you think everyone who doesn’t have psoriasis should know about the condition?
I need people to know that psoriasis is not contagious in any way shape or form. It is not related to leprosy or any other “big, scary” disease. It is a genetic disorder that poses absolutely no risk to you or others. Our skin may not look pretty or handsome, but we are generally lovely on the inside. That’s really what we want you to see; our personalities. Just give us the same chance that you would anyone else. You may be surprised to find that your pre-judgment was wrong. Lastly, if you have a question about our condition, please feel free to ask us in a tactful, kind way. Most of us are happy to educate others about psoriasis.