MarlaJan Wexler of the Luck Fupus blog has an unbelievable health story. She’s a Philadelphia native who’s had more than her fair share of health issues – from a congenital heart defect to lupus to cancer – and yet, she remains a remarkably positive and upbeat advocate for patients. Today is World Lupus Day, and to recognize the difficulties of this invisible illness, and encourage all to raise their voices like MarlaJan does, we’re thrilled to share her story:
I know you have a remarkable story. Can you tell me a little bit about how it began?
I’m actually really excited today. Did you see Jimmy Kimmel’s opening last night? His son was born with the same congenital defect that I was – it’s famous! I was born with tetralogy of Fallot with pulmonary atresia, a complex defect which allowed un-oxygenated blood to get out systemically. Thanks to four open-heart surgeries by the time I was 6, I’m here today. I do require lifelong care from my adult congenital cardiologist, and I expect to have one more open heart surgery at some point in my lifetime.
Wow. That’s pretty incredible.
I thought so too – I thought that was it, that that was enough health issues for one person. But, at age 26, I was diagnosed with systemic lupus. Doctors aren’t really sure what causes it – it could be stress, UV light, viruses. In my case, I started getting sick about three weeks after my honeymoon in St. Lucia, and from honeymoon to diagnosis was only six months. I’m lucky – some people go through the diagnostic process forever, but mine was fairly quick. While my symptoms were still fairly mild, I was working through it as a cardiac ICU nurse at Children’s Hospital of Philadelphia (CHOP) and I was going to school at Villanova to become a Nurse Practitioner. After four or five years, the symptoms were getting worse - joint pain, fatigue, skin rashes, and lesions. I was trying to live a normal 20-something life, but still taking my medications and seeing my doctors. Right after I turned 30, I went to CHOP for a cardiac checkup and there were huge changes on echocardiogram. The lupus had started to attack one of my heart valves.
So scary. What happened next?
The lupus began affecting my heart, lungs, and brain. I had to stop working – I went on disability, and started chemo treatments. And then things got really wild. I went in for an annual pap smear and was found to have stage A1A cervical cancer. Within the last year, researchers have found a link between lupus and cervical cancer. They don’t know if the lupus causes an overactive immune system that allows HPV to replicate so fast, or if it’s the treatments that suppressed the immune system – but they are linked.
Since then I’ve been diagnosed with several overlapping autoimmune diseases - Sjogren's syndrome, ITP, Behcet’s Syndrome, Raynaud’s phenomenon…the list goes on. This is very common with autoimmune conditions like lupus, unfortunately.
I started getting mammograms at age 30 due to a strong family history, and in 2014 I went to a genetic counselor who suggested I start getting breast MRI’s for further monitoring. A lump was found in my left breast on the first breast MRI, so I had a double mastectomy at the end of the year. The mastectomy caused my lupus to flare, so I definitely got sick before I got better. But now, I’m doing the best I’ve done in years and feeling pretty good.
You’ve certainly been through the wringer! Can you talk a little about how these health issues have impacted other areas of your life? I know you mentioned that you had to quit your job and school. Anything else?
I talk very candidly about this – having lupus and all of these other illnesses has certainly taken a toll on my relationships. The thing about lupus is that it is invisible, so unless I am 75 lbs heavier on steroids or walking with a cane or haven’t covered up my rashes, people can’t tell and don’t treat me as a “sick person.” The fact that you can’t even tell what’s going on in my body is the hardest thing for outsiders, and even some of my best friends. I’ve had people who think I was a hypochondriac, or thought I was making it seem worse that it was. But I was sick. Some relationships ended and some became stronger – and it’s not because people have bad intentions, it’s because some people just can’t handle it.
During an active lupus flare, you can experience pretty significant hair loss. I lost my hair and it wasn’t until I finally got up the nerve to go out without a wig that I finally was recognized and treated as a “sick person.” People would come up to me and give me a hug, say “I’m a survivor too.” That was a first for me.
But with my wig on, I’ve had people say about my lupus, “oh well, at least it’s not cancer.” It’s the worst feeling in the world to be diminished. And it happens with lupus funding and research too. Lupus is more prevalent than MS, sickle cell disease, cerebral palsy, and HIV combined, yet there is currently only one FDA-approved drug specifically for the treatment of lupus. The fact is, lupus is an invisible illness where 90% of those affected are women and 2/3 of those are minorities – so we don’t always get the resources we need.
What do you think about clinical trials? I’ve heard a lot of folks with autoimmune diseases talking about how it’s tough to qualify because autoimmune diseases are typically accompanied by so many other conditions, and there is no typical patient. What’s your take?
With regard to lupus trials, I think the main issue there is that, as I mentioned, 2/3 of the lupus population are minorities and many don’t have the means or access to search or look for a clinical trial, or they don’t see physicians who would recommend them. I’ve noticed that culturally, taking part in medical research is much more stigmatized in some minority communities.
But yes, there’s no such thing as the “textbook” lupus patient. You could line up 100 patients with the disease and no one would present with the same symptoms. So there’s no way a researcher could find hundreds of patients with exactly the same lupus.
Personally, I have never been in a trial. Because of my congenital heart defect, I’ve never been eligible. But I’m the first generation of those born with a heart defect to survive and thrive into adulthood. Now that we’re adults and we’re alive, doctors don’t know what to do with us. We’re old enough to get adult diseases and doctors are unsure how to move forward because there is no data on how aggressive treatments will affect a heart that is already compromised. So one day I certainly hope to be in a trial.
Was there a certain point that you decided to become a patient advocate? I’m curious about what drove that and how to encourage other patients to become more empowered and use their voice to tell researchers and politicians what they need.
It was not long after I had to go out on disability. I have been working since my 14th birthday, and being a nurse was my career – not having a purpose like that was making me depressed. My sister recommended I start a blog, but I said, “I’m not a writer, no one cares.” Still, one night at 4am, I went online to see if LuckFupus.com was taken – it wasn’t and so a blog was born.
In the beginning, writing the blog was free therapy – it was cathartic. I didn’t think anyone would read it, but a few months in, someone reached out and basically said, “I have lupus and you are saying everything I feel and want to say about the disease.” And I was like, “Oh my God - I reached someone and I made a difference and I didn’t have to leave my house to do it.” And it snowballed from there.
In 2014, I won the “Hilarious Health Activist” award from WEGO Health and from there I’ve been given more and more opportunities to share my story – it’s just kind of exploded. I live in Philly and there are a ton of conferences here, and I’m lucky to be able to represent patients at a lot of them. I miss my job but I’m doing something I never ever dreamed I would be doing. I get in front of 200 people to share my story. I’ve given pharmaceutical executives a piece of my mind. I never would have even thought I would be doing what I’m doing today – it’s been so crazy, but incredibly rewarding.
How would you encourage patients reading this blog to become advocates if they’d like to?
Just speak up. Not everyone feels comfortable, but if you want to make your voice heard, you have to make it loud enough. If speaking in public isn’t for you, use Twitter or Facebook. There are so many different mediums to get your story out and get your voice heard. Find what’s right for you. Don’t be discouraged, don’t worry that someone else has already told their story or conveyed the same message - EVERY voice makes a difference.
You can read more from MarlaJan at www.luckfupus.com.
