They say if you know one person with lupus, you know one person with lupus. I’ve known this fact for a while. But the GlaxoSmithKline (GSK) 2015 Lupus Summit in Philadelphia proved to me that only lupus could pull together this crowd.
And what a crowd it was. I sat amongst lupus blogger royalty. These rockstars are living with lupus and showing the world how to thrive with a chronic illness. Different perspectives, different methods, same goal: To spread lupus awareness wherever they go. I’ll list links to their blogs at the end of this post so you can connect with them as well.
Meeting the GSK Team
The day started with a presentation from GSK—the one where they try shaking the image of the Big Bad Pharmaceutical company. I worked in corporate communications for a decade in an industry also labeled big and bad, so I had an idea of how it would go. I also knew, judging by the tenure of the employees in the room and the genuine way they communicated with us, that their team is proud of the company they work for, which goes a long way in my book. In fact, a rep from their patient advocacy arm has lupus—and just had a healthy baby. How cool is that?
Survey Data Illustrates Life with Lupus
Next, we were presented with data from a world-wide lupus survey, in which they looked at the perspectives of patients, caregivers, and providers. These findings stood out most for me:
- Symptoms. 61 percent of lupus patients minimized their symptoms to their physician.
- Career. More than half of patients and caregivers indicated lupus impacted the patient’s career progression (interestingly, only 25 percent of physicians reported this).
- Severity. While patients say they experience a large number of lupus symptoms daily, physicians believe patients only experience most symptoms several times a month.
- Financial. Nearly three-quarters of patients (75 percent) and caregivers (72 percent) agree that lupus is a financial burden, yet physicians say about one-third of their patients (34 percent) report this effect to them. (I can attest to this! My labs have been stable for two years, but I still see my doc every three months. I have insurance, and the labs they take at each appointment still cost nearly $250. And don’t forget my $60 co-pay.)
- Communication. About three-quarters of physicians (76 percent) believe their patients have difficulty communicating their support needs to others.
- Doctor visits. Now, I find this weird. 83 percent of physicians report seeing patients every two to three months compared to only 63 percent of patients and 68 percent of caregivers reporting this frequency of consultations. Surely this can’t all be attributed to brain fog.
New Resources Help You Become a Better Advocate for Your Health
The survey makes clear that it’s on us to be better communicators and better advocates for our health. But how?
Enter GSK again. I think it’s cool that the only drug manufacturer to come out with a new drug for lupus in the last 50 years is also concerned with helping lupus patients manage their illness. Check out these resources they developed:
- This lupus checklist allows you to record your symptoms, which can help you—and your doctor—better understand how you feel.
- Do you keep a journal? This one is designed just for people with lupus. You can customize it and use it to document not only your symptoms, but your thoughts and feelings as well.
- Mobile more your style? There’s an app! The My Lupus Log is an easy way to track your symptoms and record how they impact your daily life.
My GSK Lupus Summit Aha Moment
As I scanned the room, one thing became clear: This group of women should have never met. Me, a farm kid from Iowa, hanging with a poet from NYC and a patient advocate from LA and a nurse from Philly…you get the drift.
So what struck me most? Every person in that room had reasons to feel sorry for themselves. Could things be worse? Sure. Could things be better? Oh hell yes. It sucks to be so young and feel pressured from your doc to have a baby or worse yet, face some really tough, permanent decisions surrounding your fertility. It’s so sad that one patient planned her funeral at age 18, and it’s terrible that the disability system designed to help people in these situations is so difficult to navigate.
The GSK Lupus Summit could have easily turned into a sob-fest. Yet every conversation shined with the strength of character, will, and spirit of these women. These are the people you want on your side. These are the people who will have your back, long after everyone else gets bored with the fact that your disease’s ass isn’t kickable.
I’m grateful to GSK for making it possible for us all to be in the same room.
Chronic illness can lonely. But you don’t have to be alone. You have a community. Find them here:
p.s. If you’re on Twitter, search #GSKSummit for a play-by-play of the day.
p.p.s. GSK paid for my travel and costs to attend the conference and were nice enough to provide me with a gluten free lunch.
It Starts in the Lab: Why Everyone Wins When You Support Lupus Research
Hooray, hooray, the first of May! Okay, I’m a little late there. But it’s for good reason: Lupus Colorado has updated their website. It looks awesome. Nice work, Team LC!
But, again, hooray! Because it’s May, which means it’s Lupus Awareness Month.
Beautiful month. Terrible disease.
Twenty years ago, while I was putting the finishing touches on my college entrance essays, lupus patients everywhere were receiving grim news: 40 percent of people diagnosed with lupus were NOT expected to live more than 3 years.
Today, more lupus patients than ever can expect to live a normal life span. Yet these facts remain:
There is no cure.
- More than 1.5 million Americans have it.
- Even “mild” cases can be debilitating and if not monitored appropriately, life-threatening.
- Prior to the FDA-approval of Benlysta in 2011, it had been 50 years (!!!) since a new lupus therapy had been introduced.
- More than 90 percent of people with lupus are women.
- Women of color are 2-3 times more at risk for lupus than Caucasians.
- Lupus research is underfunded and poorly understood, despite the disease’s prevalence.
So what can be done about this disease which has no known cause, few medicines, and no cure?
To me, that answer is simple: Support lupus research.
Supporting lupus research is a win for everyone. Why?
- The incidence of autoimmune disease is rising. The National Institutes of Health estimate, “up to 23.5 million Americans have an autoimmune disorder,” (cancer affects up to 9 million; heart disease = 22 million).
- An increased understanding of immune system activity can benefit us beyond lupus — people who receive transplants, AIDS patients, cancer patients, and patients of infectious disease are also likely to benefit from increase knowledge.
Advance lupus research by getting informed and getting involved. According to the LRI, lupus is considered to be the scientific prototype for autoimmune research because the immune system can attack any part of the body. When scientists unlock lupus, the door may open for some 100 other autoimmune diseases affecting millions of people.
- Lupus patients, consider joining a clinical trial. Every medication we currently take was approved because of volunteers.
- Spread awareness. Email 10 friends or post info on your social media platform of choice. I changed my profile pics–did you?
- Donate. Gifts of any size can make a large impact. I just sent a text that said LUPUS to 50555 to make a $10 donation to the Lupus Research Institute (92 cents of every dollar goes directly to research).
Before my doctor handed me that slip of paper saying “systemic lupus erythematosus,” I knew nothing about lupus. The last few years have been eye-opening to me in terms of the number of people who suffer (often in silence), the misunderstanding of autoimmune disease, the lack of tolerance we as a society have for chronic illness, and the lack of understanding we have about systemic disease. We have a lot to learn. Any donation helps.
Help those with lupus on a limited budget
“Right now all of my money goes toward paying for school and paying my medical bills,” Huffman said.
“It is very overwhelming and sometimes depressing. Unlike most of my friends I can’t hang out at the mall and shop all because I literally have no money,” Huffman said. “My body physically can’t do the things that most 22 years old are doing. And shopping is not a necessity in my life, whereas my health is my main priority. At 22, health issues aren’t what most young woman have to deal with.”
Huffman was diagnosed with lupus at 19. Her kidneys are impacted and she experiences high fevers, rashes and a lot of pain.
Lupus Colorado is always looking for ways to expand our reach to better meet the needs of people like Huffman in our state. She recently received assistance from Lupus Colorado.
For more than 40 years, Lupus Colorado has served as a resource for not only the understanding of the signs, symptoms, treatments, and outlook for the disease, but also helping patients to find both emotional and practical support during their times of need.
Through the use of an assistance fund, Lupus Colorado has been able to help individuals and their families affected by lupus with their utility, medical and dental bills, eye glasses, bus passes, and groceries, even purchasing beds for two individuals with lupus who had been sleeping on the floor. Lupus Colorado has tools that can help Coloradans with the disease. But they can’t do it alone. With help from supporters like you, Lupus Colorado can replenish the assistance fund and continue to serve as a resource for individuals and families affected by lupus.
“The Emergency Financial Assistance Fund was such a blessing,” Huffman said. “Right after Gayna called, I immediately said a prayer just thanking God. This was such a blessing. Words cannot even describe how it came at such perfect timing. I am just so grateful.”
First Class (Pass)
An uncomfortable cringe crept through me, and I thought, “Really…I thought the class structure was history, passé in our modern thinking of equality. I took my aisle seat in row 2 of coach, “second class,” I bemused, and watched through the silvery sheer curtain separating those 12 “special” passengers from us common folk.
As I sipped cheap wine, for which I was charged, from a generic plastic cup, I saw them receiving complimentary bottled wine in stemware. I didn’t even get peanuts, but first-class was served a full meal on china with real silverware. One attendant catered to them solely, while two attendants scrambled to serve the remaining 138 passengers in coach. An older gentleman even put his hands on the shoulders of the first class attendant and whispered something in her ear, reminiscent of the 60’s and 70’s when women were “Girl Fridays,” to men of stature. I watched with interest but dismay at this decades-old behavior that seemed so inappropriate now. I felt like a “have not,” watching the “haves,” from the outside.
Granted, people have the right to a bigger seat, up front if they want, and other special perks for which they pay extra. But when the announcement was made that the front lavatory was for first class only, it reminded me of the signs on restrooms and restaurants in decades past that prohibited blacks and Jews from entering.
What does this have to do with lupus? There are many different aspects to discrimination, and we who have health problems face our share. We struggle with financial hardships because of inability to work and higher than usual health care expenses. We face on-the-job discrimination, and 90 percent of us are women, “Girls Sunday through Saturday,” on duty 24/7 for our families, in spite of our illness. Men with lupus are stigmatized because it is not deemed “masculine,” in our society to be ill or not function as the “breadwinner.” We are all first class though in our effort and fortitude to swim upstream against the odds of unpredictable flares, pain, and horrendous fatigue.
How can we eliminate these discriminatory relics from the past, including class delineations, gender and racial inequalities, and even the stigma associated with illness or handicaps? I, for one, am going to send this article to the CEO of unnamed airline, and continue to support airlines whose passengers are treated equally, with special assistance to the elderly, ill, handicapped, and families with small children. Those airlines where passengers can pay for extras discreetly from any seat, and there is no silvery curtain separating people based on wealth, stature or class. I would prefer our military men and women get special perks for their committed service to maintain our freedoms.
Now that I am stiff from sitting, hurting all over, and have a full bladder, I’ll begin my long journey from row 2 to 26 where a good second class girl can stand in line waiting for the back lavatory. On your next trip, be selective, and have a nice flight!
Planning for life
You might think that this was a course about death. On the contrary, it was a course about life and how you can plan the time you have left to prepare for your death and to live well during the time you have left. For some of you it will be a brief time; for others it will be decades. For some it will be a “good” death; for others it will be a “bad” one. We have within our power the options to decide what we want and to put in place those things that will make the end a meaningful and pleasant experience.
First, we must remember that lupus is a lifelong illness, and no matter how we plan our future, lupus may outsmart us on any given day. We may plan a vacation and find that we are spending those beautiful vacation days in the hospital. Been there, done that. Second, we must always be prepared for a lupus flare. That means that when we plan a trip, we must be ever mindful of the things we must do to plan for a great vacation. That is bring all the pills you need for every day of your trip and a few days extra in case of a trip delay. Get the name of a doctor you can see in the place you are going. Pack lightly and only what you can carry. If you are going on an escorted tour, tell the tour director of your special needs if any. Shorter trips are more doable that longer ones because fatigue is a large part of lupus.
The above might be called our bucket list, the list of places you want to see and the things you want to do in the time you have left. Make that list. Prioritize that list. Start to plan for the first thing on your list. By the way, you can always re-prioritize your list.
Get your affairs in order. This means that you need to have a will. You need to have a durable medical power of attorney and an Advanced Directive. An ethical will would be great to have. How to get this done the best way is to go to an attorney that specializes in drafting wills and other legal documents and ask her to help you with your important documents. Wills can always be changed and so can other legal papers, so start with one and think about it for a while. If it suits your needs and wishes, great. If not, you can always change it.
You may also want to put a planned funeral in place so that your children or other heirs do not need to have to deal with this. There are so many things that need to be done that some advanced planning is very helpful.
OK, now that you have done all this, it’s time for some fun. We’ve talked about the end of life, so now let’s talk about between now and then. Hopefully you will have many good days with your lupus at bay. Think about what you would like to do with that time. For me, volunteering is really important. I have gained a lot of knowledge and experience in my working years and I want to share this with some organizations that could use my help.
As you know, I write columns for the Lupus newsletter. I have served on the board of the Lupus Foundation. Now I volunteer for the Arthritis Foundation and give my time and efforts to advocating for issues that are important to people with arthritis and lupus. I go to Congress and ask our Senators and Representatives to consider bills that will give money for Arthritis research and for reducing the amount of money patients have to pay for co-pays on expensive drugs.
You can choose different ways to give back to your community that has helped you along the way to making lupus easier for you to manage. Lots of places need your help. You can work from home on the telephone. You can work in the office of an organization that needs your help. You can write letters to your Members of Congress asking for their help on issues of importance to you. You can help at your church or synagogue. Even if you can only give a small amount of time, please don’t hesitate to give it.
I’m going to end this column with a poem written by Robert N. Test, American Poet (1926-1994),who assisted in developing organ transplantation.
To Remember Me
Give my sight to the man who has never seen a sunrise, a baby’s face, or love in the eyes of a woman.
Give my heart to a person whose own heart has caused nothing but endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
If you must bury something, let it be my faults, my weaknesses, and all prejudice against my fellow man.
Give my sins to the devil.
Give my soul to God.
If, by chance, you wish to remember me, do it with a kind deed or word to someone who need you. If you do all I have asked, I will live forever.
Until next time,,,
©2014 All rights reserved. Anita Fricklas