May Newsletter

November 26, 2018

LRI launches federal provider program

Singer Toni Braxton Shares Personal Story of Lupus

The Lupus Research Institute (LRI) National Patient Coalition participated in today’s launch of the Lupus Initiative®, the culmination of its five-year advocacy campaign resulting in $4.6 million in Federal funding to make the healthcare provider education program possible.

Helping to draw attention to the need addressed by the Initiative to train professionals in lupus diagnosis, six-time Grammy award winning singer Toni Braxton shared her personal story as a lupus patient and Board member of Lupus LA, an LRI Coalition partner. “It took years to be diagnosed with lupus,” said Ms. Braxton. “There were so many signs like joint pain and extreme fatigue, but it wasn’t until my white blood cell count dropped twice that I was finally tested for lupus. Proper treatment can only begin after lupus is diagnosed, so early detection is very important.”

“As both a lupus patient and member of the LRI National Patient Coalition, I am extremely grateful to Ms. Braxton for speaking on behalf of all of us who worked tirelessly to make the Lupus Initiative a reality,” said Kathleen Arntsen, President of the Lupus Foundation of Mid & Northern NY. “Her struggles with misdiagnosis are reflective of my struggles and the struggles of millions in the U.S. and worldwide. It underscores the urgent need for all healthcare providers to be prepared to properly recognize, diagnose and treat lupus.”

The Power of the Patients

To help save future lupus patients from years of suffering with undiagnosed symptoms, the LRI began working in 2009 with then HHS Deputy Assistant Secretary for Minority Health, Dr. Garth Graham to find a solution. A federal program was conceived to train physicians and other healthcare professionals about lupus. The Office of Minority Health, Office for Women’s Health and the U.S. Surgeon General’s Office partnered to develop the new program.

To build support for what evolved into the Lupus Initiative®, LRI Coalition patients nationwide developed a multi-year advocacy campaign to educate Congress about the disease and the need for budgetary support; many key Members of Congress became committed champions.

“We’ve worked hard for many years to bring attention to the needs of the lupus community, and though there is more work to do, it is encouraging that research has led to new breakthroughs for diagnosis and treatment,” said Senator Frank R. Lautenberg (D-NJ).  “I applaud the patients and families affected by lupus for their persistence and dedication to this fight and pledge to keep championing their cause.”

Congresswoman Lucille Roybal-Allard (D-CA) noted, “Our greatest objective for the Lupus Initiative is to reduce racial disparities that persist in lupus diagnosis and care, particularly among minority populations in disadvantaged neighborhoods. African Americans and Hispanics are two to three times more likely to have lupus than Caucasians. Now we need support from my colleagues in the House and the Senate for funding to disseminate the materials to train healthcare professionals throughout the country.”

Culmination of Collaboration

The American College of Rheumatology (ACR) was selected by HHS to manage the Initiative with funding through a cooperative agreement with the Office of Minority Health. LRI leaders take part in an advisory consortium guiding the development of the Initiative.

“The $4.6 million in Federal support generated for the Lupus Initiative exemplifies the power of our patients to effect positive change benefitting the entire lupus community,” commented Margaret Dowd, President and CEO, LRI. “We are very grateful for all those who gave their time and energy to make this program possible.”

“The LRI Patient Coalition has so much to celebrate today, but they are not going to stop until every healthcare provider can recognize, diagnose and treat lupus,” Braxton said.

Young man fights back from lupus

If you caught a glimpse of the Sauter family chatting at their dinner table or walking out of church, you’d have no idea of the journey this family has been on together.

Within this family is a bond that cannot be replicated. When one of the grown sons, Michael, was fighting for his life with lupus, this family cried, prayed and suffered in a way that no one would ever choose to experience. They spent 70 days at Children’s Hospital when son Michael was in high school.

Like many boys, Michael was an active child who enjoyed playing basketball, running around outside and generally goofing around. A blood test when he was 13 years old indicated he may develop lupus, but life continued as normal until Michael literally collapsed from the pain of excrutiating headaches just after his freshman year of high school.

It turns out his brain was swelling from lupus. He was admitted into the Intensive Care Unit at Children’s.

“It was a massive brain swell. I had IV’s, breathing tubes, and tons of meds,” Michael said.

Though that was just over ten years ago, Michael’s mother, Bev, weeps when she recalls Michael slipping away before her eyes. On more than one occasion doctors told the immediate family to bring friends and other family members from the waiting room to say goodbye to the young man.

“I always had faith, but it had not been tested until that moment,” Bev said. “We told Michael that it was OK to go, that wherever God needs to take you today, that’s where you go.”

Whether modern medicine, excellent doctors, or the power of prayer gets the credit, it is fair to say that Michael’s recovery was a miracle. Not easy, but a miracle nonetheless.

The teenager stayed in the hospital for a total of 70 days, 30 of which were in the ICU. It was his entire summer vacation and though he recovered, he left a different person than he was when he entered.

“I was so weak after the whole thing. I lost virtually all muscle mass and the medications had taken a toll on my body,” Michael said. Not only had the steroids made him gain weight, but the massive amount needed to save his life degenerated his bones.

“It was a game-changer,” he said. “I wasn’t the same person anymore. My body was different. I couldn’t do the activities I used to do, like play basketball or tennis.”

He tried to exercise to gain strength, but ended up needing a hip replacement during his sophomore year of high school. “I kept wondering what would happen next.”

For a while, Michael’s fear that serious health issues were always on the horizon was a valid one. A series of surgeries to repair damaged bones after his hospital stay interrupted his life and his transition into college.

Though Michael’s lupus was like nothing Bev had ever experienced before, her son was not her first family member to be diagnosed with the disease. Two of Bev’s sisters had lupus, as did one cousin, but Bev said the disease impacted the family members in her life differently — and none as severely as Michael. One sister had sore joints and took prednisone for relief. In her other sister, lupus presented itself in her skin with rashes and other irritations. Bev’s cousin suffered from heart problems because of lupus.

“As a family, we realize that lupus is something we will deal with for the rest of our lives,” she said. “But it’s getting better. For years we didn’t feel comfortable making plans. We lived day-to-day as a unit of four trying to survive.”

But to look at Michael now, one sees a young, successful, handsome young man with his whole life ahead of him. Despite lupus and its associated complications, Michael graduated in four years from Colorado State University. He works full time now and enjoys bicycling, photography and strumming the guitar. Though he’s never been as sick as he was in high school, lupus is still a daily struggle. Some days he’s in pain, others he may be fatigued, and still others he may be battling the the latest cold or flu bug.

“But you can’t let lupus define who you are,” Michael said. “You have to find interests that give you an identity other than being ill. Do what you have to do to normalize it.”

And while memories of Michael’s stay at Children’s Hospital can be intense and haunting, there’s a reservoir of love, faith and a spirit of community that the Sauter’s draw from when they need strength.

“That experience taught us to allow people to help,” Bev said. “From our employers, to our neighbors, to people we met at the hospital to total strangers, the outpouring of support was amazing. You have to open up your heart and simply say, ‘thank you,’ knowing that you’ll pay it forward when you can.”

Introducing Blogger Carie Sherman

Help Lupus Colorado wish a warm welcome to our Blogger Carie Sherman. Carie is a  mom of a little girl, a freelance writer and is in “lupus limbo.”

Carie is a freelance writer who works with businesses and agencies of all sizes in Colorado and beyond. Most of her clients are in health care.

Prior to her writing career, Carie worked in corporate communications for twelve years. She holds an undergraduate degree in communication from the University of Northern Iowa and a master’s in applied communication from the University of Denver.

So what is a blog? And how’s if different than a column or story. A blog is sometimes referred to as an online personal journal.  The main difference is that its online presence allows blogging to be more interactive than its traditional counterpart.

Sherman already has a couple of posts on our site. Check them out! And we encourage you to post your own thoughts on topics she writing about.

Silver Linings

Sandy Kanowitz

By Sandy Kanowitz

In my younger years, I never would have predicted I would be writing articles. As a high school student, I was blessed with an oddly brilliant, eccentric English teacher, who demanded the seemingly impossible, yet kept us entertained and fascinated by strolling around on our desktops in the amphitheatre-style classroom, stomping on the resounding wood in excited, passionate outbursts related to the English language. He was only four feet tall, but made himself gigantic in our eyes from his desktop perch, his knees at our eye level. How boring it could have been, yet he used his height disadvantage to pique our interest, light fires in our creative centers, and elevate the mundane to passionate heights. So it can be, living life with lupus.

How is that you ask? Living with lupus can certainly be boring, mundane, and downright depressing at times. How many days, weeks, months do we waste wallowing in self pity, forlorn at our plight to live with fatigue and pain, lamenting our losses of productivity in our careers and personal lives, fearing some insidious slide into isolation, disability, dementia? We spend much of our time grieving our losses, remembering the good old times, and fighting our current, less than ideal reality.

My English teacher serves as a reminder that out of the boredom of everyday existence, like the language we use, can emerge passion, productivity, newfound creativity, and worthwhile purpose. We just need to adopt a new mindset. We need to reach within, down deep in our cache of talents, skills and tools, and design a new blueprint for our futures. Yes, we have futures. We have things to accomplish, to learn and share, new skills to acquire and implement in ways we never imagined in our pre-illness lives.

Illness need not be a dead end or “T” in our paths. Think of it as a “Y”, where we a still move forward but perhaps on a different trajectory than first planned. Life is full of diversions, but we can still progress on a purposeful path. For a long time, I thought of my career as a nurse practitioner as ended – over with – kaput. But no, I am still employing my education, knowledge and experience, just in a different format. Instead of caring for patients, I am helping fellow lupies learn to manage life with a chronic illness. Instead of writing prescriptions, I am writing articles to help keep us going, in fine fashion, in a purposeful, rewarding direction.

My prescription to all this month is to spend some time daydreaming, brainstorming about your passions, your skill-set, your talents, and the possibilities you have or can create to make a difference. Delve deep, reach high into your imagination of what you can do, within your current capabilities, to make your world, and that of others, a better place.

The old clichés about finding the silver linings are true. I found one tonight. Out of my insomnia, in that fuzzy layer between wakefulness and sleep, came the inspiration to write this article. It took from 2 to 3 a.m., during which my mind was distracted from the pain that interrupted my sleep, and I managed to do something worthwhile (I hope). With laptop, a warm blanket, comfy on the couch, I accomplished something. You can do the same, using time that otherwise may have been wasted. After a snack, I think I can go back to sleep, satisfied and ready to dream again.

Reprints available with permission. 05/2013

Mom organizes walk in memory of daughter

Sporting shirts with screen-printed photos, running shoes and open arms for anyone who needed a hug, friends and family of Lisa Pineda-Ramirez trickled in Sunday to Bittersweet Park in Greeley to walk in her memory.

Three years ago this month, Lisa, 28, died of lupus. On Sunday, her mother, Trish Pineda-Ornelas, with pom-poms in hand, counted down the beginning of the third organized 5K to honor Lisa.

“I kind of regret not going on a (lupus) walk with her, but I thought, ‘Well, I am going to do this in memory of her,’ ” Pineda-Ornelas said before the walk. “So it’s in her name, and that is cool.”

Pineda-Ornelas said the walk garners a little more attention each year. After the first walk — which she conducted the year her daughter died — Pineda-Ornelas said she contacted Lupus Colorado, which has helped her spread the word and raise more money to donate to medical research. This time around, the walk raised about $1,200 for the organization, with nearly 100 participants, puppies and strollers in attendance.

Debbie Lynch, CEO of Lupus Colorado, said there is no known cure for lupus, an autoimmune disease that tricks the body into attacking healthy organs.

“It’s only treating in the sense that (the patient) can be made more comfortable,” Lynch said at the walk.

She said there is some promising research in progress, including at the University of Colorado’s Anschutz Medical Campus. Of those who get lupus, 90 percent are women, Lynch said.

Lisa battled lupus for 12 years before she died.

Michelle Gallegos, a part of Lisa’s extended family and a childhood friend, said Lisa was always ready to cheer someone up who had a bad day.

“She was just full of life,” Gallegos said. “Even when she was sick, she was always just full of (life).”

Pineda-Ornelas said May is also Lupus Awareness Month. She said she knows several other people who are fighting the disease.

“That is what it is for now,” Pineda-Ornelas said of the walk. “Those affected by it or who have lost loved ones.”

Reprinted with permission from the Greeley Tribune

Motown Magic a magical & memorable evening!

Ron Ivory and The One on One band!

Ron Ivory and The One on One band!

Living with lupus is no fun. Fortunately, raising awareness for the disease can be!

Lupus Colorado’s evening of Motown Magic on May 3 raised brought supporters out for a fabulous night out with the Hazel Miller Band and Ron Ivory’s One-on-One and the MilesApart Band. The crowd jumped out of their seats and danced to Motown favorites.

Denver businesses Xcel Energy, Jammin’ 101.5 radio, The Denver Urban Spectrum newspaper, Civil Technologies and The Soiled Dove sponsored the event.

“It was amazing to see so people having a great time for such a great cause!” said event coordinator Rhonda Jackson. “Thanks to so many!  Truly magic!”

Back to Newsletters