Doctors Blamed Woman’s Health Problems on Her Weight — But Then She Was Diagnosed with Lupus (Exclusive)

Woman diagnosed with lupus after years
Alexandra Marcela, 26, recognized with lupus after years of misdiagnosis.Photograph:

Alexandra Marcela

When Alexandra Marcela was recognized with lupus at age 20, she’d by no means heard of the autoimmune illness earlier than.

Her well being problems had began two years earlier throughout her first being pregnant, she tells PEOPLE, including that her signs included blood clots in her legs, rashes on her face and hives throughout her physique.

“My legs had been so swollen I could not stroll,” says Marcela, now 26. “Docs had been telling me it was preeclampsia, however this was additionally my first being pregnant and I used to be having so many problems. So it was very irritating, and no person knew the reply to what was occurring.”

She continues, “I bear in mind I went to my physician for one in every of my checkups and my OBGYN checked out my face and mentioned I had a butterfly rash, so she despatched me to a rheumatologist. I used to be a heavier set woman, so after I began following up with all my appointments, I used to be all the time informed that dropping pounds would repair all my issues.”

Marcela, who lives in Orlando, recollects being informed “my legs would not damage if I wasn’t so heavy set.” She additionally says her docs added she was “most likely depressed,” as a result of she have to be “sad” with herself and “insecure.”

Two years after having her first little one, Marcela grew to become pregnant once more. She was 280 lbs. on the time, and hadn’t misplaced any weight from her earlier being pregnant. The second time round, she says, her signs had been a lot worse.

“I used to be like, this cannot be regular, there’s one thing mistaken,” she says. “I obtained despatched again to rheumatology. I needed to do tons of blood work. They did an A panel, and certain sufficient, they got here again that I had lupus,” she continues. “I used to be 20 years outdated, and I am like, what the heck is lupus? I’ve by no means heard of lupus a day in my life.”

Lupus happens when the physique’s immune system assaults its personal tissues and organs, and the irritation brought on by lupus can have an effect on joints, pores and skin, kidneys, blood cells, mind, coronary heart and lungs, in line with the Mayo Clinic.

Alexandra Marcela shares lupus symptoms.
Alexandra Marcela butterfly rash.

Alexandra Marcela

Following her prognosis, docs put Marcela on steroids, which brought about her to achieve extra weight. She recollects at one level being 5 lbs. away from weighing 300 lbs.

“Numerous the unwanted effects with these steroids are I simply wish to eat and eat and eat,” she says. “I simply began gaining weight. However now, right here I’m once more, and my docs are like, ‘your lupus is so unhealthy since you’re obese.’ ”

Marcela’s docs beneficial she get weight reduction surgical procedure. “They mentioned the surgical procedure would make my lupus signs go away,” she continues. “I believed this was the important thing to dwelling a lupus free life, so I am like, ‘Okay, full ship. Let’s do it.’ ”

After present process the surgical procedure, Marcela misplaced 145 lbs. in a single yr. However her weight reduction didn’t result in the enhancements promised by her docs.  “Now right here I’m immediately, half of the scale of the individual I used to be earlier than, and my lupus has by no means been worse,” she says. “It is a day by day battle.”

Woman diagnosed with lupus after years
Alexandra Marcela embracing hair loss.

Alexandra Marcela

The mother of three explains she has a butterfly rash on her face that, it doesn’t matter what she does, is not going to go away. The Orlando resident additionally mentioned that simply brief walks trigger her legs to swell.

Nonetheless, she strives to be there for her youngsters, even when her signs — which additionally embrace fatigue and hair loss along with the rash and swelling — are unhealthy. “I’ve to indicate up for them, so I’ve to battle,” she says.

In studying to take care of her lupus, Marcela started sharing her story on TikTok. To her shock, the primary video she made discussing her lupus signs obtained over 3.5 million views.

“I actually bear in mind it prefer it was yesterday, I used to be sitting on the sofa, and I do not forget that I used to be feeling a bit of bit bizarre,” she says. “I am occurring Google and social media and I could not discover a lot on TikTok about lupus.”

“Anyone needed to advocate,” she continues. “You do not ever hear a lot about autoimmune illnesses. And there is nonetheless no remedy. The worst half about it being an invisible sickness is that we could really feel we’re actually crumbling on the within, however no person is ever going to see that.”

“I am actually large in your prognosis simply doesn’t outline you,” she provides. “To today, I am going learn feedback on my movies, and there may be such a big group of individuals coping with autoimmune illnesses and lupus who had been additionally misdiagnosed for years.”

Marcela believes if TikTok had been round when she was youthful, she could have discovered a solution to her well being points sooner. “I simply assume that on the time after I was 17 coping with these signs, if TikTok was a factor then, and I discovered somebody who’s spreading consciousness, it might have helped me a lot,” she says.

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