Wednesday, May 20, 2015

The Lupus Research Study - Pfizer, LRI, and 23andMe. Exploring the role of genetics and lupus!

It's been survey central here at Despite Lupus headquarters!

I've recently participated in several lupus surveys, one of which led to a video interview for a study about photosensitivity and lupus, and another which prompted me to join a lupus research study to help better understand genetics and lupus. I had planned to simply pass along the genetics study information in a post, but I thought I needed to know what was involved before recommended it. In doing so, I got hooked! So now I'm doing the study, and would welcome some company!

Image result for 23andme lupusThe study is a joint effort between Pfizer, the Lupus Research Institute (LRI), and 23andMe, the leading personal genetics company.

Here's 23 andMe's official launch statement:

The company is [officially] launching The Lupus Research Study in collaboration with Pfizer and the Lupus Research Institute to enroll 5,000 individuals with lupus for a study to better understand the underlying genetic causes of lupus such as the onset, progression, severity and response to treatments for lupus.  

Genetics has started to play an increasingly important role in medicine to understand disease characteristics and to develop new medicines. With your participation, we could provide insight as to why some people are more likely to get lupus, what triggers the onset of symptoms and why people respond differently to treatment options and drugs.

We want to find a better way to treat lupus through genetics. By partnering with Pfizer (a pharmaceutical company developing drugs to treat lupus) on this study, we will work together to learn how your genes and your environment could play role in lupus drug treatment, and how they relate to lupus risk and progression. This will be the single largest genetics study of lupus anywhere in the world.

Our research objective is to understand the genetic associations found between lupus patients' DNA and their disease, and apply this understanding to Pfizer's drug development efforts.

Here's all of the information you need, and the initial requirements are as follows:

In order to participate in the first study within the lupus community, you must meet all of the following criteria:
  1. You've been diagnosed with lupus by a qualified physician.
  2. You consent to have 23andMe (via a partner) contact your physician to obtain your medical records.
  3. You're willing to submit a saliva sample for DNA testing and complete online surveys related to your condition.
  4. You are at least 6 years old (minors under 18 require parental consent to enroll).
  5. You have access to the Internet.
  6. You reside in the United States.

You'll then be asked to answer some additional questions to determine if you're eligible to participate. The study itself will require an hour or two of your time, and includes a saliva test (an idea to which I'm warming up!), and some surveys. Check out their website here, and you can also read an article about the study.

Image result for 23andme lupus

Monday, May 18, 2015

Prescription Drug Savings: Check out these websites

A few months ago, I posted about the scarcity of Plaquenil, causing a price hike in our beloved lupus staple drug. I've had great feedback from many of you sharing your experiences - know that we are all learning from your comments.

In fact, several of you found such valuable information online about ways to save money on our prescriptions, I thought I'd pass along. (Thanks in advance to those of you who forwarded the information to me!)

According to the LFA's KNOW LUPUS game I mentioned in an earlier post, lupus patients take an average of 8 prescription medications to manage their disease. I believe it - I've been on that many, plus, plus, plus, and the costs of the prescriptions have always been a consideration.

So here are the cost-saving tips, some of which I hope will help save you a few bucks:

1) This prescription savings site is great! You put in the name of the prescription you want to fill, specify your location, and a list of pharmacies and their most competitive pricing come up in the form of a coupon. The coupons offered range in value, but you simply print out the coupon, or download it on your mobile phone, and take it to your pharmacist. I even think they price match! I used it for a new prescription I just filled, and while I only saved $3, it was still worth it. I literally searched for it on my phone while I was checking out at the register, and was able to redeem it right then!

Here's a great video explaining how GOODRx works. I'm also going to see if it works for Darwin's Anti-Inflammatory, and Bernadette's EpiPen. I can't make any promises, but it's worth a shot!

2) Pharmacy's Secret Savings: Two separate readers wrote in about this, and I've personally experienced it myself, so I'm going to mention it. But again, no guarantees here! Apparently, many pharmacies receive singular coupons or extra savings from various drug companies to offset the cost of medications. I remember filling Bernadette's Epi-Pen Jr. for the first time, and having a discount card from the prescribing doctor that saved $100. (It was still almost $200!) But the pharmacy had the same card when I went to fill it, so it never hurts to ask if there's any sort of discount card or coupon that could be applied to reduce the cost. Just be sure to thank your pharmacist either way. I used to bring my pharmacist cookies, which seem to make for very speedy refills. :) 

3) The LFA suggested this site, where you can take advantage of Needy Meds' drug discount card. In fact, if you google "drug discount card", a slew of options come up. If you can give it 20 minutes, I bet you'll be able to find some savings. The LFA also suggested checking their website for updates on the plaquenil issue. Since their press release was the reason I posted about the price hike to begin with, they are most definitely aware of the problem, and are investigating the causes.

In the meantime, hang in there, plaquenil users. Normalcy is bound to return soon! 

Friday, May 15, 2015

Upcoming Lupus Chat - Hospital for Special Surgery - Tuesday, 5/19/2015

I love the lupus folks at Hospital for Special Surgery! I led a lupus workshop at HSS several years years ago, and would highly recommend any event hosted by HSS. They get the right people involved so you get the right answers. I hope you get a chance to participate in this upcoming Facebook Chat!

Friday, May 8, 2015

Healthline's Best Lupus Blogs of 2015 - thank you, thank you!

As I said on Wednesday, April was a busy month. I barely had time to blog, what with the events I outlined in my last post. Add to that a great vacation at the beginning of the April to Sanibel, Florida (which inspired a new pillbag design to be unveiled in a day or two!), and my work at Despite Lupus had to take a back seat.

That's why I was so touched to find out this week that Despite Lupus was chosen as Healthline's Best Lupus Blogs of 2015. I'm so honored to be included, and I'm in such good company, too - click here to see all of the great lupus blogs featured. Your comments, emails, tweets, and updates are what keep me going, so know that every time I share, you're welcome to share, too. I love the feedback!


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I'll leave you with this fun little video the folks at Alliance for Lupus Research came up with to briefly explain what lupus is, and how it attacks the body. Watch and learn from Mac the Molecule!

Thursday, May 7, 2015

KNOW LUPUS Card game - How it came to be!

This is so cool! Check out this design website, Viget, where the illustrators who collaborated with the LFA on their KNOW LUPUS card game talk about the design process and what went into creating the online game. You can learn the reasons behind the illustrations, see the first drafts, and much more. I LOVE learning the back story, and I think you will, too!

Click here to check it out, and see below for one of the illustrations that landed on the cutting room floor. You'll have to check out the website to find out which tidbit of info it was meant to accompany!

Wednesday, May 6, 2015

Navigating life's detours while keeping lupus on the straight and narrow

Last month was a tough one. I battled a sinus infection, a bout of stomach flu, nursed both my girls through their bouts of stomach flu, fended off the effects of being anemic (though I didn't know it at the time), and tried to find the right combination of bright optimism and grave concern to cope with my mom's illness. Thankfully, I've made it to May, which is already looking up. It's Lupus Awareness month, and there's so much lupus buzz on the internet, I feel like jumping for joy. I launched four new pillbag designs, too, and growing my business is always a welcomed endeavor and a pleasant distraction. Now, I'm headed back to Indiana for a much-needed check in with my mom and dad, and I'm hopeful things will continue to move in the right direction!

But as my mom's health continues to waver, and I travel back and forth to see her, I know I need to keep my own health at the forefront. Not just for my sake, but for the sake of my family, and particularly my dad. The last thing he needs is to juggle two sickies!

(In fact, I did that once, and I promised never to do it again. Years ago, when my mom had triple bypass surgery, I went home to "help", only to find myself as incapacitated as she was. I could barely stay awake for more than an hour at a time, had zero energy, and had to take a wheelchair back and forth from the hotel to the hospital. I spent most of the time sleeping in an open hospital bed next to my mom, with nurses trying to figure out what I was battling. The day I returned from my visit, my rheumatologist checked me into the hospital, and I received a series of blood transfusions immediately. Over the course of my week long hospital stay, I was diagnosed with lupus-induced pancreatitis, severe anemia, went on a clear liquid diet, and dropped 10+ pounds. I had been absolutely no help to my dad (and sister, who was home, too), and I only added stress to an already-chaotic situation. So the rule I now follow is this: if I'm sick, I stay home.

But if I keep myself well, I can continue visiting my mom. My dad knows I have little room for error, and is a champ for putting up with my accommodations while I'm visiting.  Here are a few of the precautions I took with my most recent emergency trip home, which I'll continue to keep in mind for future trips:

1) Played it smart with my flight:

I got the call that I needed to fly home on a Wednesday evening around 9pm. My instinct was to jump on the first flight out at 7:00 the next morning, but that would have left me with a lot of re-arranging to do, since Johnny was out of town through Saturday. I considered a later morning flight, but that still meant finding coverage for the girls, arranging school details, etc, all in the wee hours of the night, while packing and fending off worrisome thoughts about my mom. Even when my out-of-town in laws came to the rescue, saying they could arrive by noon on Thursday, my innate response was to dash out the door the moment they arrived, taking the first afternoon flight out. I knew it wasn't the smartest idea, because I would be flying during my nap time, but I desperately wanted to be there for my mom. My dad pleaded with me to fly later in the day, so that I could fit in a good nap at home first. Truth be told, it didn't take much for me to acquiesce. I knew that was the right thing to do. While it was hard not to rush to my mom's side, I managed to channel a few lines from my book about not overdoing, and booked the first late-afternoon flight I could. Thus, I arrived in Indiana rested and ready for the emotionally taxing, yet productive weekend. It would have been a very different outcome had I not taken the time to regroup before flying out.

2) Threw the hostess-with-the-mostess attitude out the window:

Knowing my in-laws were coming to the rescue the next day, I breathed a big sigh of relief when I finally went to bed around midnight. But looming in the back of my mind was the fact that I'd just returned a few days earlier from a two-week spring break, and the house was in no shape for visitors. I had my work cut out for me! While Bernie and I made some major headway the next morning, I knew I had to be careful. Did I really want to use up all of my energy I'd need for the weekend cleaning the house from top to bottom in preparation for my in-laws? The answer was decidedly no. After we did as much as we could comfortably do, we just...stopped. There were dishes in the sink, and the guest room sheets were in the dryer when my in-laws arrived, but it didn't matter. They are family - and they get it. Once they arrived, they jumped right in, and I went up to take my two hour nap, so that I could be ready to fly out in a few hours. It worked beautifully, and while I apologized for the haphazardness, I knew a few dirty dishes was a better alternative than an exhausted lupite.

3) Stayed mindful of my nap:

Once I arrived in Indiana, we hit the ground running. My dad filled me in on my mom's status, and we headed over to see her in the hospital. We stayed past visiting hours that first night, but knowing we had a 90-minute drive home, we made sure we left before 9:30 or 10pm. I could have held my mom's hand all night long, but what my dad and I really needed was our rest. We continued that motto every day, my dad dutifully doing whatever was required to make sure I got in a nap every afternoon. Some days, we drove 90 minutes to see my mom, drove home a few hours later, in time for my afternoon nap. Once I woke up,  we drove 90 minutes back, visited some more, and then drove home. Yes, it was a pain. And yes, my dad was an all-star for making it happen, but it was absolutely necessary. (Good news is that my dad slept almost the whole time I did, so maybe he needed the break, too!)

4) Collected my thoughts by writing questions and more questions:

Lastly, I tried to maintain my sanity while I was visiting - balancing the shock of my mom's decline in health with the need to objectively extract necessary information from the medical staff. I knew I needed to keep a running list of questions for the nurses and/or doctors, and had quite a list prepared upon my arrival. But I quickly realized that my mom's health was fluctuating so drastically, my questions had to change just as rapidly. So every morning and evening on the drive to and from the hospital, my dad and I would revise and rewrite our list of questions for the medical staff, for the case worker, for her primary care doctor, etc. Throughout each day, our list of questions evolved. Some days, I'd erase an entire chunk of questions, because my mom could no longer do "X", or something new would present itself, so we'd add a whole new line of questioning. It was good for my dad and me to rehash things before we saw mom, and just after our visit. Not really in an effort to formulate the best questions, but actually to anticipate the kinds of answers we should expect, and prepare ourselves for where we were headed. It helped to talk about what we'd just witnessed, too - whether it was my mom's inability to communicate, or the moments where she kept a firm grasp on my hand indicating that she loved me with all her heart. We allowed ourselves time to reflect on what we were thinking and feeling, and it was time well spent.

As I head out this weekend, I'll keep all of these things in mind, and will probably come back with a new list of "things to remember" when traveling under stress. I'll be sure to share, if so!

Tuesday, May 5, 2015

Lupus Awareness: KNOW Lupus Game - test your knowledge today!

The Lupus Foundation of America has designed a great way to raise a few bucks while having a little fun. Best of all, you can learn something new about lupus while you're at it!


Now it takes just 30 seconds to raise money for lupus! Play the LFA's brand new KNOW LUPUS card game, test your understanding of this cruel disease, and earn a dollar for lupus. Every time you complete a level, LFA's National Board Chair's family will donate $1 to lupus research.

At last glance, the fundraiser had raised $43,000 and counting. Click here to play