With a plum part on the popular show “ER,” actress Kellie Martin was on an upswing. But a few months later, her younger sister died suddenly from lupus. She was just 19. Now Martin is urging women and their family members who suspect they might have symptoms of lupus to get help. Learn more about the disease in this exclusive Lifescript interview with Martin…
Losing a loved one is tough, whatever the circumstances. But when that person dies in her teens, it makes the grief even harder to bear.
Former teen actress Kellie Martin, now 35, knows that pain too well. She lost her teenage sister, Heather, to lupus.
Beloved by fans of the '90s family drama “Life Goes On,” Kellie had just landed the part of medical student Lucy Knight on “ER” when Heather caught a virus.
She had symptoms like stiff joints, intense muscle pain, abdominal discomfort, fatigue and an inability to eat. Doctors were baffled when Heather’s misery escalated, Kellie says.
“The doctor who finally diagnosed Heather [with lupus] sat her down and said, ‘I’m not going to examine you [or] look at your tests. Just sit and talk to me.’ He really listened,” she recalls.
Since Heather’s death, Kellie has worked with the American Autoimmune Related Diseases Association (AARDA) to raise awareness about the symptoms of lupus. She explains how stress affects autoimmune diseases and how lupus patients need to fight for the right diagnosis.
How was your sister misdiagnosed for so long?
Autoimmune diseases are misdiagnosed [because] the symptoms are so often fleeting and hard to describe.
My sister was probably having some symptoms years before she got sick. She hid it from us, so by the time her body was really in trouble, she was very, very ill.
Did other factors aggravate her condition?
She was very stressed at the time. She was taking final exams, got a virus and, on top of that, she had this underlying lupus, which hadn’t been diagnosed.
The eight different doctors she went to diagnosed it as a virus because they were treating those immediate symptoms.
How can lupus patients help themselves?
Patients have to keep track of their symptoms. I always encourage people who think they have an autoimmune disease to keep a daily journal of their feelings.
So, when they go to the doctor and they’re actually feeling good that day, they have their little journal and can say, “But last Wednesday, I felt like this.”
You really have to be empowered to get the right diagnosis.
Do you know why your sister died so quickly?
Heather’s condition was acute. Who knows if it would have turned out differently if she had been diagnosed earlier? I try not to think too much about that because I just can’t live that way.
Is it a chronic condition?
Autoimmune diseases are a constant drain on our health-care system. It’s really important to get them under control, to get proper treatment and eventually – hopefully – develop a cure.
Did becoming an advocate for lupus patients help you deal with your grief?
The best way to grieve is to be constructive, and that’s what I tried to do. It doesn’t always make it easy.
Heather passed away in 1998, and when I just spoke about autoimmune diseases at the United Nations in September, I had trouble keeping my emotions in check.
So your grief still feels fresh?
You wouldn’t think it would be that way, but it really is for me to this day.
If it’s this raw and personal for me, imagine what it’s like for someone living with lupus.
I’m so grateful to have had the opportunity to be constructive with my grief for 10 years. It gives me a place to put it, rather than just feel sorry for myself.
How do you recover from each event?
I go back to my family and look at my 4-year-old, Maggie. She’s the most joyful person on the planet.
She loves life, and I remember that life can be so good. I go back to the joy and being grateful for every day I have.
Since autoimmune diseases are hereditary, are you concerned about your daughter’s health? (I KNOW NOT ALL AUTOIMUNE DISEASE'S LIKE RSD/CRPS, ARE NOT HEREDITARY, AND IF THEY CALL FIBROMYALGIA AN AUTOIMUNE DISEASE, IT IS NOT EITHER. THIS IS TO BE DEBATED! ACCORDING TO WORLD REKNOWN SPECIALIST, DR. HOOSHANG HOOSHMAND. CAT)
Certainly. When I found out I was having a girl, I was a bit scared – 75% of autoimmune diseases affect females. I’ve always been very careful with Maggie’s health, sleep and food.
A lot of people think that having organic food is a trend, but it’s a way of life in our household.
Is eating non-organic food linked to lupus?
I think they’re ultimately going to discover that pesticides and hormones and all the bad stuff put in our food is a trigger for autoimmune diseases.
So Maggie eats organic, I’d say, 90% of the time. And she goes to bed at 6:30 every night and gets up at 6:30 a.m. She sleeps 12 hours a night.
Do you worry about vaccinations?
Maggie has had all her vaccines because they’re amazingly important.
We’ve spaced them out so that when she goes to the doctor she doesn’t get four vaccines at once. We do it piecemeal. I don’t want to bombard her system with anything.
What do you do to prevent getting an autoimmune disease?
I stay as stress-free as possible because stress is a gigantic trigger.
But we keep as much stress out of our lives as we can by eating and sleeping well.
What’s your favorite way to reduce stress?
I started doing yoga after my sister died and it’s been with me since. It’s a time for me to stop and breathe. I do it almost every day.
How do you keep Maggie stress-free?
I don’t overdo it with her. She goes to school every day, then when she comes home, she plays in our yard, and that’s pretty much it. I try to keep things quiet for her.
How have you helped people with your dedication to lupus education?
I just raise a bit of public awareness through doing what I do. A lot of people know the words “autoimmune diseases” now, and they know the word “lupus.”
I think a lot of people have gotten quicker diagnoses because they’ve asked the right questions.
I’m also the target demographic here – a woman in her childbearing years. I’m the perfect person to speak to people my age about lupus.
This is the time women get autoimmune diseases or when symptoms [of lupus] present themselves.
What do you hope your advocacy accomplishes for lupus patients?
Women can relate to me and maybe [that makes them] more apt to listen and [think]: I remember hearing, a year ago, Kellie Martin on a talk show talking about autoimmune disease. I’m going to ask my doctor about that.
It just plants a seed in someone’s head that when necessary – and hopefully they never need to ask the question – they’ll [remember], Oh, wait a second. I remember her saying something about this.
What should women be mindful of?
Don’t be scared about what’s around the corner. Living in fear causes more stress than anything.
Women should listen to their bodies. So often, especially if you’re a working mom with so much on your plate, you ignore the signs your body is giving you.
We really need to take care of ourselves and take time for ourselves. Once you put the kids to bed, take a bath or read a book.
Take time… stop… deal with your stress, and appreciate what life has in store for you in a meaningful way.
To learn more about symptoms of lupus, read this article and consult your doctor.
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