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Living with lupus as a teenager and what it has taught me

There are times when I sit down and realize how easy it has been to forget who I used to be. Not just as a person, but health-wise, both physically and mentally.

Don’t get me wrong, the number of blessings I have received over the 17 years of my life are numerous, and I am forever thankful for those treasures that got me through the troubles of life. After all, life is no wish-granting factory, as John Green said in his book The Fault in Our Stars.

But at the same time, there are certain things that a child should never have to go through, and while I’ve had my fair share of freight trains, I’ve always found a way to get back up.

I’ve got to admit, lupus was a train that hit me harder than I thought it would, and it took a long time to get back up, leaving me with scars to prove it.

I was once a vibrant youth, ...

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Meghan Trimble
Meghan Trimble
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A snapshot of the onset: the Solliday Story 2002 through 2009

Doctor, my hair is falling out in clumps and I have open sores on my hands and feet.

You think I have lupus? Are you sure? No … nobody in my family has lupus. Isn’t that a disease that is inherited? I think I just have food allergies.

Why do I feel so tired and it feels like I have bricks attached to my feet? Now you think I have fibromyalgia? But when I eliminate wheat and gluten, my muscles don’t hurt and I am not as achy. But wait, high fructose corn syrup makes me itch! So I am allergic to corn too? What am I going to eat now? Well, if this is what I must do to feel better, then I guess I better figure it out and just do it.

Now what? You think I have Lyme disease too? … but I don’t’ remember getting bit by a tick with Lyme, although I spend lots of time in the garden. ...

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Trish Solliday
Trish Solliday
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Learning and lab: Top three moments

This summer has flown by! I feel so incredibly blessed to be spending my summer in the Niewold Lab at Mayo Clinic. The time that I have spent in lab has confirmed my love for research, and playing with bioassays all day has specifically increased my interest in biological research. I find it absolutely fascinating that we can learn so much about cell signaling and responses just by using a collection of buffers, patient sera, a variety of reagents, and complex instrumentation. I would like to focus this post on my top three lab learning moments.

1. Science is not perfect and troubleshooting is almost always necessary.

The beauty of science is that something can always be learned. If an experiment doesn’t give you the results you expect, you learn where the fault might lie through a variety of troubleshooting techniques.

The best part is that the experiments yielding unexpected results sometimes teach you more than those that give you the results ...

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Blair Stewig
Blair Stewig
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Research is my genotype of thing

It’s been a crazy couple of weeks since my last post, as I’ve started to run my experiments and sort through data. Although it initially seemed strange to have just started my experiments so late in the summer, I’ve realized it’s due to an aspect of research I haven’t experienced before: project preparation.

Although I’ve done research before, I’ve never had to order my own reagents, find my own protocols, or locate and prepare my own samples. In other words, I’ve never had my own project before, so this has been a taste of what research is really like as opposed to the more prepared version I’ve experienced before.

Besides project preparation regarding protocols and experiments, I’ve also read through a seemingly endless stream of literature in order to fully grasp my project. This has been one of my favorite parts of research, as sometimes it seems like I’ve found everything that I can in regard to my project until I stumble ...

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Emily Fellows
Emily Fellows
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Not “highs and lows;” more so “fasts and slows”

As I finish up the second month of research in the Rheumatology Department here at Mayo Clinic, I’ve come to get accustomed to the feeling and pattern of lab life. Coming into this research experience, I was not at all aware of what to expect in terms of work load, and every day I’d leave the lab with a different emotion.

I found myself antsy after days where I would simply be conducting literature searches and lab prep, and I also found myself flustered when I had two or three patient samples come in simultaneously for processing.

The highlight of these fluctuating events, however, is that the reality of the situation dawned on me: eight to 10 weeks in a summer is a mere snapshot of a working lab. Research is never done, and for every week there is of seemingly not doing much but reading, there is a month down the line of executing a project the literature helped design. Therefore, ...

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Anoohya Muppirali
Anoohya Muppirali
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The patient behind the test tube: the true beauty of translational research

Hello everyone! My name is Anu Muppirala and I was given the wonderful opportunity to conduct lupus research at Mayo Clinic in the Rheumatology Department alongside Dr. Uma Thanarajasingam, M.D., Ph.D. She has been an absolute joy to work with so far, and I look forward to gaining a better understanding of lupus as I assist her in the fascinating research questions she is pursuing.

To provide a bit of background, systemic lupus erythematosus (SLE) is an autoimmune disease characterized by high levels of a cytokine known as Type 1-interferon alpha (IFN- α). Cytokines are signaling molecules that are released during an immune response, which trigger the activation of immune system cells, like B cells, as well as helper or cytotoxic T cells.

Since high IFN- α levels are a trademark of patients with SLE, it would seem logical that a drug which inhibits IFN- α production would help alleviate lupus symptoms. However, within an SLE patient group taking one such drug, ...

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Anoohya Muppirali
Anoohya Muppirali
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Introducing the project

Hi, everyone! I’m Emily Fellows, a Lupus Foundation of Minnesota Summer Fellow working in Dr. Timothy Niewold’s lab at the Mayo Clinic. First, I would like to thank the Lupus Foundation of Minnesota for providing me this amazing opportunity to not only learn more about systemic lupus erythematosus, but to contribute to the ongoing research efforts directed towards developing a better understanding of lupus, its treatments, and various diagnostic methods.

Dr. Niewold’s lab studies the pathogenesis of various autoimmune diseases, including lupus, rheumatoid arthritis, multiple sclerosis, and more. In particular, Dr. Niewold’s lab explores how genetic factors and variations contribute to the presence of autoimmune disease and how interferon levels impact the immune system response. My work this summer addresses the genetic variations of lupus in regards to lupus-induced kidney disease, or lupus nephritis.

Alongside Dr. Yogita Ghodke, I will be exploring a gene called Apolipoprotein L1 (APOL1) and its multiple polymorphisms that have been expressed in end-stage renal disease African-American ...

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Emily Fellows
Emily Fellows
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Settling into the lab

Hello! My name is Blair Stewig and I am fortunate to be conducting research under the supervision of Dr. Timothy Niewold and Dr. Theresa Wampler Muskardin at the Mayo Clinic this summer. As a Lupus Foundation of Minnesota Summer Fellow, I not only have the opportunity to learn a great deal in lab, but also a chance to experience what it is like to work on a project that could potentially improve the diagnosis and treatment of a disease. I am so thrilled to be contributing to the scientific community and I cannot wait to see what the rest of the summer holds.

My research this summer concerns the question of if the cytokine (signaling molecule) interferon alpha and/or beta is present in patient sera – extracted from blood samples – from tuberculosis and inflammatory bowel disease patients. If there is interferon activity, we will be able to quantify and ratio the activity levels. These cytokines have been found in ...

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Blair Stewig
Blair Stewig
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Marking a milestone: looking back on my lupus diagnosis

If you have ever been sick, please read. If you haven’t, count your blessings and please keep reading.

The day is March 10 and this day six years ago marks the first day down a hellish six-month path to lupus. I had nighttime fevers for two nights until I walked into urgent care. This was the beginning of a whirlwind crisis; I was advised to rush to the ER.

It was thought I had an infection of some sort, but nothing was showing up. I was given medication to help combat this, but ended up having a very severe and life-threatening reaction to it.

So starts the hospital snowball effect.

I had so many ER visits I eventually just left my bag packed next to my bed. I cried every time on the way to the hospital because I felt like such a disappointment to everyone around me, especially my husband at the time. I was affecting his sleep too because you can only go ...

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Chris Cronick
Chris Cronick
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Disruptions to best laid plans and intentions

When I took to the role of Ambassador, I was excited to help promote all the events and learning experiences the Lupus Foundation of Minnesota (LFM) has to offer. I have participated in many events and have always come away with new knowledge and, most importantly, a great sense of fulfillment from spending time with fellow individuals living with lupus. I was happy to represent the Foundation and looked forward to further connecting with others living with this disease.

As many of you know, lupus sometimes messes with your best laid plans and intentions. This was certainly the case for me this year. Let me back up a bit to give you an idea of my lupus history and how this summer’s series of events led me here.

I mentioned in an earlier blog post that I was diagnosed with Systemic Lupus Erythematosus (SLE, lupus) and Sjogren’s Syndrome ...

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Larry Norgren
Larry Norgren
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