The National Human Genome Research Institute is celebrating the tenth anniversary of the Human Genome Project (HGP), which was officially completed on April 14, 2003. Ten years later, researchers continue to discover even more about the human genome.
It is common knowledge that lupus runs in families. In fact, primary relatives (siblings, parents, children) of a person with the condition have a three- to five-fold increased risk of developing the disease compared with the average person on the street. But until just the last decade, we haven’t known how increased risk of lupus could be inherited.
Figuring out how lupus runs in families has been complicated. Lupus is not like some genetic diseases carrying a high profile in the popular press. The phrase “genetic disease” might bring to mind hemophilia among the royal families of Europe, or the “boy in the bubble” with immune deficiency, or cystic fibrosis. In each of these cases, mutation of one or a few genes is the illness driver.
In contrast, for most cases in which lupus runs in families, alteration in more than one gene is likely behind the increased disease risk. Lupus is thus said to be “polygenic.” In fact, if risk of ...Continue Reading →
One hears statements of this kind while playing the popular board game “Clue.” Players of Clue must travel around an imaginary old mansion while collecting hints. Based on hints, players make educated guesses about the “where, who, and with what weapon” facts of a murder mystery.
Pursuing better treatments and cures for Systemic Lupus Erythematosus (SLE) is a little like playing an exceedingly complicated game of Clue. Villainous SLE has done dastardly deeds, reducing quality and quantity of life for many of its victims. Researchers who would bring SLE to justice confront a daunting array of “weapons” (infections, hormones, drugs, lifestyle choices, host immune cells run amok) that could inflict injury within the “mansion” of a patient’s immune system. Like Clue players, researchers must use logic. As in Clue, they must also test proposals (called hypotheses, frequently based on observations in patients) with experiments in the laboratory. They must ...Continue Reading →
“I recommend that you take the medication each day, come hell or high water.”
I sometimes use this cliché’ phrase as I counsel patients suffering with Systemic Lupus Erythematosus (SLE). Clinical research shows that diligence and persistence in use of immune system-modulating drugs is important for optimal disease control for many people with SLE. Some drugs need to be taken day in and day out, for months or years, to be most effective. Repeated clinic visits, blood monitoring requirements, pharmacy charges, and side effects all represent “hell and high water” barriers that threaten SLE patients’ good intentions. Months or years get to be a long time during the battle to maintain treatments. As a prescriber who has been around the block a few times, I know that it takes dedication and diligence to adhere to regimens involving multiple medications. Until we have cures, I consider it part of my job to be a cheerleader for long-term use of proven treatments.
This week, ...Continue Reading →
2012 began for me with the Lupus Foundation of Minnesota asking me to be an ambassador for their organization. I was initially hesitant for a couple reasons. One was the lengthy flare I had been dealing with from the recent, and very sad, death of my father – I wasn’t sure if I would be able to follow through. The second reason was my ongoing, on-and-off lupus diagnosis – I wasn’t convinced that I would be a very good ambassador with my “lupus-like”, “watching you for lupus”, borderline ANA-negative, and undifferentiated mixed-connective tissue disease titles that I carried. I had only recently been declared as having lupus from my immunologist/autoimmune specialist in Plymouth, and I thought they might want someone with a more black and white case, not fifty shades of gray!
However, because I have had so many years of medical testing, hospitalizations, surgeries, placental abruptions/miscarriages, bleeding disorders, neurological issues and other crazy symptoms that have systemically affected me, ...Continue Reading →
It is with the heaviest of hearts that I recently learned of the loss of a young, athletic lady, taken by complications of her disease activity. I really don’t believe there is anything that grabs the attention more of those afflicted with lupus, than the unexpected death of a fellow lupus fighter. My deepest sympathy and heartfelt wishes to the McHale family as they mourn the loss of their 23 year-old daughter, Sasha.
Straight-up, lupus is cruel. It doesn’t distinguish between someone who has lived a full life to that of someone who is just beginning theirs. One day you can be moderately fine, the next you’re battling a flare that is raging out of control … and why? Why is there such discrepancy between individuals with this autoimmune disease and within their personal course of flare management? Why are we able to pull ourselves out of an attack on our bodies, only to go through it all over again?
In lupus, ...Continue Reading →
Today I was fortunate enough to come home from work early and take a nap. I work full time and even though my job is protected through FMLA, I can only use so much of that during a month. Some days I don’t feel bad enough to stay home, but I don’t feel good enough to work all day either. Plus I know that pushing myself can sometimes be detrimental and cause a flare.
For me, having lupus is an everyday adventure. It’s very hard to plan to do things because I don’t know how I’m going to feel on a daily basis. The consistent thing about my lupus is that I can count on being extremely fatigued most of the time. I’ve decided that if I’m going to be tired, I’m going to be doing things that I want to do.
I’ve also had to learn that I need to listen to my body. When I don’t, I can look forward ...Continue Reading →
When living with a life-threatening, chronic illness it is very (repeat VERY) easy to get ahead of yourself, to worry about the unknowns and to fear the future. Perhaps mingling in the knowledge of what lupus can do and has already done in your life, may have accelerated those thoughts for you. For me it has. I feel like the past ten years have been spent wondering how long it will be before something terrible happens again, which irregular heart rhythm should I take seriously, and are they damaging my heart?
How long will I have before my lungs require oxygen?
Will the continued muscle weakness and joint inflammation completely debilitate me?
Will the immunosuppressants lead to a life-threatening infection or cancer?
When and where is the next big hurdle … ?
On the other hand, I often wonder can this ...Continue Reading →
Dr. Emily Gillespie, University of Minnesota researcher who will present at the Lupus Foundation of Minnesota’s Lupus Conference on December 15, recently sat down with MinnPost contributor Susan Perry to discuss lupus and its complications, current research and even mortality. The Q & A-formatted interview can be viewed on the MinnPost website: http://www.minnpost.com/second-opinion/2012/11/sasha-mchales-death-brings-attention-little-understood-autoimmune-diseaseContinue Reading →
Hello everyone! I’m Kim, one of the 2012 Lupus Ambassadors for LFM. We may have even met at the Twin Cities, Rochester and Duluth Lupus Walks for Hope, or at the Lupus Night at Target Field this past year.
For those of us living with lupus, 2012 has been an exciting year filled with hope, amazing awareness efforts, breakthroughs in research and increased public donations to find a cure. I’ve seen this on a national level, but quite extensively here in our own state. It’s not just the turkey talking when I say how grateful I am! I feel truly blessed when I think of all the hard work the LFM staff, board of directors, volunteers and researchers have provided this year. So to all of you making a difference, thank you.
A little bit about myself … I just celebrated my 44th birthday this week. Those yearly milestones on the calendar have taken on a whole new meaning during my adult ...Continue Reading →