Unraveling a Medical Mystery: One Woman’s Story of Rising Above Lupus
Key takeaways:
Shannon Lee had to mourn her life as an underwater photographer and scuba diver when she was diagnosed with lupus.
Lupus is difficult to diagnose, and the symptoms can mimic those of other conditions.
Shannon, who wants to use what she’s learned to help others, has become an ambassador for the Lupus Foundation of America (LFA).
When Shannon Lee started to feel the effects of a mysterious illness — which turned out to be lupus — in her early 20s, she struggled to keep up with the super-active life she had built.
“I was in really, really good physical condition,” says Shannon, who’s now 44 and lives in Burbank, California.
Back then, she was rigorously training for a stunt performer test. Her passions were underwater photography and scuba diving. Her photography business was taking off, and she was traveling internationally to shoot events.
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BENLYSTA is for people 5+ with active SLE (lupus) or active lupus nephritis on other lupus medicines. Not for people with severe active central nervous system lupus.
Do not use BENLYSTA if you are allergic to belimumab or any ingredients in BENLYSTA.
The most important information about BENLYSTA
Immunosuppressive agents, including BENLYSTA, can cause serious side effects. Some of these may cause death.
• Infections:
fever, chills, pain or burning with urination, urinating often, coughing up mucus, or warm, red, or painful skin or sores on your body. Infections could be serious, leading to hospitalization or death.
• Allergic (hypersensitivity) reactions:
itching, swelling of the face, lips, mouth, tongue, or throat, trouble breathing, anxiousness, low blood pressure, dizziness or fainting, headache, nausea, or skin rash. Serious allergic reactions can happen the day of, or in days after, receiving BENLYSTA and may cause death.
• Mental health problems and suicide:
thoughts of suicide or dying, attempt to commit suicide, trouble sleeping (insomnia), new or worse anxiety or depression, acting on dangerous impulses, other unusual changes in your behavior or mood, or thoughts of hurting yourself or others.
Before receiving BENLYSTA, discuss with your healthcare provider if you:
• think you have an infection or have infections that keep coming back. Do not use BENLYSTA if you have an infection unless your healthcare provider tells you to.
• have or have had mental health problems such as depression or thoughts of suicide.
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Possible side effects of BENLYSTA
• Progressive multifocal leukoencephalopathy (PML). PML is a serious and life-threatening brain infection. PML can result in death or severe disability. Tell your healthcare provider right away if you notice any new or worsening medical problems: memory loss, trouble thinking, dizziness or loss of balance, difficulty talking or walking, or loss of vision.
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The most common side effects of BENLYSTA are nausea, diarrhea, fever, stuffy or runny nose and sore throat, persistent cough, trouble sleeping, leg or arm pain, depression, headache, and pain, redness, itching, or swelling at the site of injection (when given subcutaneously). These are not all the possible side effects of BENLYSTA. Call your doctor for medical advice about side effects.
Please see Prescribing Information and Medication Guide for BENLYSTA.
What is BENLYSTA?
BENLYSTA is a prescription medicine used to treat people 5 years of age and older with active systemic lupus erythematosus (SLE or lupus) or active lupus nephritis (LN) (lupus-related kidney inflammation) who are receiving other lupus medicines. It is not known if BENLYSTA is safe/effective in people with severe active central nervous system lupus.
It is not known if BENLYSTA, given under the skin, is safe/effective in:
• children with SLE under 5 years of age or weighing less than 33 lbs
• children with LN under 18 years of age
It is not known if BENLYSTA, given in a vein (intravenously), is safe and effective in children less than 5 years of age.
BENLYSTA IV is available as 120 mg in a 5-mL single-dose vial and 400 mg in a 20-mL single-dose vial. BENLYSTA SC is available as a 200 mg/mL single-dose autoinjector and prefilled syringe.
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‘Bad growing pains’
Then, Shannon gradually started to feel very achy. “I felt like I had growing pains, like bad growing pains,” she says. “I would run fevers randomly, when I never had issues with fevers. And then I had chronic fatigue.”
This was not the need-a-nap kind of fatigue people imagine, she explains. It was like the feeling of having no sleep for a couple of days in a row. She had severe brain fog, and her body felt heavy. Her hair started thinning. And she got chilled easily and developed a series of infections and rashes.
Her symptoms overlapped with those of several other conditions. And they were as puzzling to physicians as they were to her, so, at first, she was misdiagnosed with multiple sclerosis.
It would take 5 years to get a definitive diagnosis of lupus — specifically, systemic lupus erythematosus (SLE), which is the most common form of the disease. But she’s not an outlier. According to the Lupus Foundation of America (LFA), the average time it takes for lupus to be diagnosed is 6 years.
How to live with lupus
Lupus is an autoimmune disease, meaning that the body’s immune system attacks healthy cells along with invading threats. It is chronic and can cause widespread inflammation and tissue damage in any part of the body.
Shannon has the kind of lupus that attacks the heart, lungs, and brain. So she had to give up scuba diving. And she was no longer able to keep up with work commitments. She couldn’t promise she would feel well enough to photograph an event several months out.
“If it wasn't for lupus, I would 100% be a photographer full time again. And I'm trying to work back to that,” she says.
A mourning period for the life she had
Shannon says that she went through an adjustment period, during which she acknowledged that the life she knew had changed forever.
“You kind of have to mourn the way your life was or what you thought it would be,” she says. “We all have goals and dreams. So that’s hard.”
But finding a way to use your experience positively can help the healing, Shannon says. She has become an ambassador for the Lupus Foundation of America (LFA) and speaks to individuals and groups about the condition and how to get connected to resources. Last year, she was named advocacy chair for the LFA’s Southern California region.
“You realize, OK, I have this thing and it's terrible and ugly. And I wish I didn't have it. But I need to figure out a way to utilize my voice to get us closer to a cure, educate more people in our community, and get more support for funding for research,” Shannon says.
More good days than bad
Today, Shannon says she is feeling good and is happy with the success of her medication regimen. She has more good days than bad. But she knows that can shift at any time.
“I think, for most people, it’s way more bad days than good,” she says. “People will go into remission with lupus and then there might be a trigger, or they get the flu or COVID or something. And then, boom, they’re back to higher disease activity.”
Shannon takes about 18 medications and supplements a day, in addition to two injectable medications a month and injectable synthetic vitamin B12 every week.
She says the goal now is to limit the amount of times she gets sick throughout the year.
Working full time can be very difficult for people with lupus, she acknowledges. According to the LFA, 89% of people with lupus say they can no longer work full-time because of complications from the condition.
“You might be great one week and then, the next week, be in the hospital,” Shannon explains.
15 migraines a month
Many people with lupus experience migraines and other types of headaches. Shannon says she resigned from a position last year because she started getting migraines and couldn’t work to her full potential.
“I was getting upwards of 15 chronic migraines a month, and they were mimicking strokes,” she says.
At the same time, lupus treatment is very costly, and the out-of-pocket expenses can be substantial. Working or having good insurance coverage is essential for most, Shannon says. But she’s found that insurance often doesn’t cover some of the therapies that help — such as acupuncture, deep-tissue massages, extended physical therapy, and nutritionist visits.
But it’s not just the physical and financial impacts that are difficult. There is a lot of misunderstanding around the condition.
Shannon wants to dispel a couple of myths. She says she gets asked whether lupus is contagious and that some people think people with lupus are just lazy. But lupus is not contagious. And although people with lupus may not look ill to others, it’s not laziness.
Since it may not be obvious that a person with lupus is ill, it may be hard for others to understand why they often have to cancel last minute or decline invitations. For Shannon, canceling plans used to come with intense feelings of guilt. But now she is at peace with needing to put her well-being first.
Shannon says it’s important for others to know that: “People with lupus want to participate. They want to live their best lives. They want to be active in their community and be with their friends and the people they love.”
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