Tag Archives: lupus

Attempting to Conquer and Cover #SXSW While Battling #Lupus

It’s been a couple of years since I’ve attended SXSW (South By Southwest).  There are a few reasons as to why that is so but for the sake of not making this a 50 page dissertation (insert laugh),  I will only address two of those reasons.

1) Anyone who knows me is quite aware that I am a lover of music who often roots for the indie artist.  You know, that one with so much talent oozing out of the depths of their soul?  The one that prepares for SXSW in hopes that he/she will be seen, heard, or perhaps discovered.  And well, to me, the substance of SXSW isn’t much about that anymore.  And so,  for a while, I decided not to attend because of this but then I thought about it – what if others felt like me? What if we all stopped attending? Then who would be to witness to all of the great music out there? And while, I still have my feelings about the politics of it all, I am not here to criticize. Not at all.  It’s a great experience and I am thankful to be have been a part of it.

2) A couple of years ago I was diagnosed with Lupus, although I had been battling the symptoms years before I was diagnosed. And without going into too much detail, Lupus is an autoimmune disease that causes inflammation — pain and swelling. It affects the skin, joints, kidneys, lungs, nervous system and other organs of the body (more information here).

With that being said, I recently had to take a step back (I love being busy!) and actually leave the career that I loved so much.  However, I knew I just couldn’t sit at home doing nothing.  Fast forward to today, and I have the privilage of writing for a weekly Houston publication along with contributions to some music blogs here and there; all from the comfort of my own home and at the leisure of my own pace!

So yes, it was time to tackle SXSW again but this time as an accredited writer/photographer.  No lie, I was intimidated.  Covering a festival this massive is fast-paced.  Who can upload their write up first….who got that million dollar picture? How in the hell was I going to keep up?  Please no Lupus flare up. 

Upon opening day of the festival’s interactive and film portion, I had already been to Austin twice that week.  One for a business meeting and the other for the Latin@s In Tech conference.  For some, that 2 to 3 hour drive from Houston to Austin (and back) might be an easy feat but for one battling Lupus, not quite so. Needless to say, my first day at SXSW, I was exhausted yet thankful.  Thankful for the clouds that beautifully shielded that sun from pounding down on me.  Sunlight can cause a lupus rash to flare and may even trigger a serious flare of the disease itself.  The sun has bought me down one time too many.

And I’ll be damned that on the very first day, I began to get a flare-up.  My hands swollen, legs in so much pain – the pain  I just didn’t know how I was going to get from one location to the other – would I give in to the pain in my knees?  The arthritic agony when snapping pictures of iconic artist? 

Unfortunately, in the end Lupus won but I didn’t accept defeat until after I got what I headed to SXSW for! I proved to myself that yes, I can still do what my heart desires, you’re never too old (or sick) to have some fun, and I got my picture of Molly Ringwald during the 30th anniversary of the Breakfast Club!

 

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Findings Give Hope to Plant Extract as Possible #Lupus Treatment

New findings by a biomedical engineer and his team at the University of Houston (UH) raise hope for a new class of drugs to treat lupus that may not include the long list of adverse risks and side effects often associated with current treatments for this disease.

Lupus, or systemic lupus erythematosus, is a progressive, degenerative disease in which the immune system turns against itself, attacking a person’s healthy tissue, cells and organs. Symptoms range from debilitating pain and fatigue to organ failure and a host of other impairments. An estimated 1.5 million Americans, and at least five million people worldwide, have a form of lupus.

Though there is no cure, a UH researcher and his team are actively working toward finding new treatments and, ultimately, a cure. Chandra Mohan, Hugh Roy and Lillie Cranz Cullen Endowed Professor of biomedical engineering in the UH Cullen College of Engineering, and his group’s latest work could lead to new, more natural therapeutics for lupus that use a plant-derived chemical. The promising findings were recently published in Arthritis & Rheumatology, the monthly journal of the American College of Rheumatology.

With only one drug specifically approved for the treatment of lupus in the past 50 years, lupus patients are commonly treated with steroids, a class of immunosuppressive drugs that delay the development and progression of the disease by suppressing the immune system. By suppressing the immune system in its entirety, however, this mode of treatment carries with it an increased risk of infections and other harmful side effects.

In this latest research, Mohan and his colleagues present new findings that detail the use of a synthetic, plant-derived compound – abbreviated CDDO – that was shown to effectively suppress the multiple steps of lupus development in murine models, including the onset of kidney disease.

One of the most common organs to be attacked by lupus is the kidney, manifesting in lupus nephritis. While this condition doesn’t affect all lupus sufferers, an estimated 40 percent of lupus patients develop it. Lupus nephritis, which causes inflammation of the kidneys and impairs their ability to effectively rid the body of waste products and other toxins, is the leading cause of lupus-related deaths and results in tens of thousands of hospitalizations per year.

“The development of lupus is a two-step reaction. First, the immune system develops antibodies that attack the body’s own DNA, then that activated immune system attacks the kidneys,” Mohan said. “We found that CDDO may block both of these steps.”

Mohan says there is much left to be discovered about CDDO, including how it works in suppressing the progression of lupus. The next step for this research is to confirm whether the CDDO compound suppresses the immune system across the board, or whether it simply suppresses the activation of the specific signaling pathways that lead to the development of lupus. To find this out, Mohan’s group will test it in the lab to see if they can mount the proper immune response. If not, Mohan says the compound likely could be suppressing the entire immune system, which is the current problem with using steroids to treat lupus. Even if the compound is shown to be generally immunosuppressive, however, it still may be a better treatment option than steroids for some patients.

 

More at www.uh.edu

#Lupus and Sleep Problems

As we all know, sleep is important to our emotional and physical health. It’s a time to re-boot, refreshing our minds and our bodies to wake up fresh to a new day. But for many people with lupus, a good night’s sleep can be elusive.

A new study published in the Journal of Rheumatology showed that people with lupus have more sleep problems than people in the general population, and anxiety and depression seem related to these sleep disturbances. Fatigue is a major lupus symptom, and not sleeping well only adds to a feeling of fatigue and lethargy. Anxiety and depression are common experiences for people with chronic illness, and it is often difficult to distinguish whether the depression is caused by lupus, if the anxiety is caused by a medication side-effect, or if these emotional experiences are a result of having to cope with having lupus. Regardless, it is a good idea to tell your rheumatologist if you are not getting enough sleep, and also if you are experiencing symptoms of anxiety or depression.

Keeping a sleep diary to track your sleep patterns can be helpful. Perhaps you will notice a relationship with certain factors in your life and the nights that you have sleeping difficulties. For example, maybe every time you had to deal with a challenging person in your life you did not sleep well the night before or after. Or perhaps you notice that since taking a certain medication you have more trouble sleeping.  If you use a smart phone, you can even try a sleep diary ap.

Read more at LupusNY.org

[Recap] #LupusChat with Dr Akerkar on Lupus & Pregnancy

First, a huge thanks to Tiffany (@TiffanyandLupus) and Dr. Shashank Akerkar for the invaluable information. 

Secondly, no I am not pregnant.  I have Lupus and want to share this information with any of my fellow spoonies out there either already pregnant or thinking about starting a family. 

Here is some information that was shared yesterday.  However, I do recommend that you speak with your primary care physician on this matter.

1) Lupus does NOT make is harder to conceive.

2) However, data shows that spontaneous abortions and stillbirths 5 times risk as compared to non lupus pregnancies

3)Fetal loss in decreased from from 40% in 1960–65 to 17% 2000–03.

4) Lupus is not associated with infertility unless the woman has been treated with cyclophosphamide

5) Cyclophosphamide used for nephritis can lead to premature ovarian failure

6) Recent studies a higher incidence of premature menoapuse in #lupus probably due to anti ovary antibodies (Read more here)

7) One should not have active kidney disease (minimum 6 months) prior to planning pregnancy

For more information, visit TiffanyandLupus

 

Olympic Gold Medalist Gabby Douglas Inspires Teen With Lupus

Amarissa Mauricio has always been a fan of U.S. women’s gymnastics team star and Olympic all-around gold medalist Gabby Douglas. “She is such an amazing person, and that’s why I wanted to meet her, because she was in gymnastics and the Olympics and her story was kind of like mine,” she said. “[She] went through a lot and wanted to quit, and she didn’t.”

Douglas’ example inspired Amarissa, 13, through a life-threatening illness and months of treatment.

In January 2013, U.S. Army Sgt. 1st Class Conrad Nazar had been transferred from Wisconsin to a base on Puerto Rico. The rest of the family, including Amarissa’s older siblings, Brandon Mauricio, 15, and Jenna Zepeda, 18, would join him.

That April, Amarissa started feeling weak to the point that she could not stand. The diagnosis was systemic lupus — an autoimmune disease that can affect any part of the body and has no known cure.

“Instead of attacking all the bad things, it attacks all the good things and the bad takes over,” explained her mother, Dyan Zepeda-Nazar. “It’s an internal battle with your body.”

Amarissa was fighting infections and an enlarged heart, but that wasn’t the worst of it: Her kidneys were in stage 4 failure. For three days, she ran a fever of 105 degrees that refused to break even though she was surrounded by ice packs in her hospital bed.

“Everything was shutting down in front of us,” her mother said. “How do you process that? You don’t. You beg for your life to be taken before theirs.”

What’s more, Amarissa was old enough to know how serious her situation truly was.

“The worst part was when right in the middle of it I didn’t think I was going to be able to get better,” she said. “But my mom told me I should hang in there — that I’m gonna get better.”

“She looked at me and said ‘I don’t want to die,'” Dyan said. “So I told her, ‘you have to fight.’ And we prayed. We did a lot of praying. She had to make a decision. She decided to fight.”

It was only after Amarissa spent 42 days in the hospital that she became stable enough to handle a six-month course of chemotherapy — a treatment doctors use to bring the immune system back under control when lupus attacks the kidneys.

t was a full month after her last dose of chemo — on Veterans Day — before the family got the good news that the treatment had worked and the lupus-related symptoms were under control.

Late last month, when TV cameras arrived at the house, she thought they were there to do a story about her animal volunteer work. Instead, they were there to get her reaction to finding out her wish to meet Gabby Douglas was coming true.

Given permission to do some gymnastics again, Amarissa was thrilled when the Olympic champion was waiting for her with matching leotards, “so we could be twins,” Amarissa said.

Photo Courtesy of Make a Wish Foundation
Photo Courtesy of Make a Wish Foundation

More at ESPN.go.com