Understanding Lupus: Activist Spreads Awareness, Breaks Stigmas

In honor of Lupus Awareness Month, TODAY’s Dylan Dreyer sits down with “Lupus Warrior” Maria Alejandra Hernandez. Hernandez shares how she struggled to understand the autoimmune disease after getting diagnosed, but how she’s learned to manage the chronic symptoms over time.

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[idonhadenuff]

I’m laying in my bed right now with Lupus watching this story. Thank for bringing awareness to the struggles of Lupus.

[janecoffey]

Lupus is cruel, my brother passed away February 24 2022 from lupus, his last months were horrible. He is no longer in pain and is happy in heaven.

[courtneymcleod]

Lupus unfortunately took my mom. Her organs were failing. She was on hemodialysis and was in need of s kidney and a liver transplant. Her heart was so weak and she went into cardiac arrest in the hospital and couldn't be resuscitated. My mom lasted 15 years after her diagnosis and she lived life well. She was a manager at Disney and she had many friends. I miss her so much.

[kerrividler]

OMG that was me. Diagnosed at 25, all the symptoms Maria has. The way lupus travels is frightening. I used to sit down, able to walk but try to get up half an hour later and can’t walk. The dr came in one day and said ‘you have rheumatoid arthritis’ the next day he came in and said ‘you have lupus too’ and then he came back and said ‘oh you have hashimoto’s thyroiditis’ - a trifecta! Mind you, I wasn’t celebrating thats for sure. It’s a very cruel disease.

[L.Spencer]

A few years ago we lost a dear, young friend in Mexico who had lupus and died of a heart attack at 16. She's resting, awaiting the resurrection.

[donnam]

Maria did a wonderful job describing this disease. Lupus has many faces, effecting millions of people in many ways. I have had Lupus and Lupus Nephritis for 32 years with many ups and downs. Thankfully, I am in a good place right now. I wish Maria and everyone with this disease the best of health and hope for a cure!

[lesleyd]

It’s absolutely horrible. This Disease needs to be talked about more and doctors need more awareness. I was told I had chronic pain and menopause for years before diagnosed.

[oddlilbird]

It’s easy to see why her husband wouldn’t leave her; what an incredible woman!

[lunamoran]

This made me cry. I had my daughter at 21 before I was diagnosed and I’m 34 now and can’t have more children because I could die if I got pregnant due to antiphospholipid syndrome and lupus. I’m happy and grateful I had a successful pregnancy at 21 though. I cried when she said “there’s no cure?” … some days I just want to cry and say why me? But then I say why not me? I’m not special. I just have to get through it. Life on life’s terms. To all the other lupus warriors out there, stay strong, life is tough but so are you ❤

[TheBritot]

Girl, I am right here with you. I was diagnosed over 10 years ago and there were times when I would just sob out of pain and frustration. The minute I started eating better and exercising I felt better and I believe I am in remission. Keep going, you are on the right track..and don't give up on having your family...it is possible, speaking from experience. God Bless you and thank you for sharing your story.💜💜💜💜💜💜💜💜

[sydneyrogers]

I've had Lupus for 50 years! At the time the prognosis was 10 years max. I've had some hard times to be sure but I'm still alive and living independently (with my 2 cats). Saw my rheumatologist yesterday and I'm stable. New treatments on the way I'm sure for younger patients.

[laurakelly]

What a lovely woman! And good to know there are men like her husband. I wish them the best. I lost a best friend to lupus and my sister has it. People often get very ill in their late 30's, and if they make it through, have perhaps remissions (but with ups and downs) till the 60's... when many succumb. Lupus can attack any organ, so the symptoms are variable. My friend had crisis in the lungs in her late 30's and made it through. Then in her 50's her kidneys were the problem till she needed dialysis. She was a warrior also and lived well with all of the difficulties till she died at 63. My sister has had several crisis involving kidneys and lungs also, almost died a couple of times...still hanging in there at 65.

People with Lupus like other immune dysfunction diseases, can look perfectly normal but be very sick. It is not necessarily something you can see. They often suffer from debilitating fatigue and pain that is not visible. Exertion is dangerous. They have disabled parking stickers and get yelled at for it. (Think twice people)

[jalen-p]

I was diagnosed 1 year ago. I had symptoms a few months before the diagnosis. Loss of hair, severe pain in joints, lost 30 lbs in 1 1/2 month, bleeding, throwing up everyday. I thank God that I recovered so fast. 🙏

[Real_Life_Is_More_Important]

I'm in the tub crying because of my lupus flare and I have so much hope for you. It's a hard life, but blessing are rich when they come.

[ShyFly]

I’m so grateful people are talking about this. So grateful! I have been diagnosed for 20 years and it took 4 years to finally be diagnosed. Awareness is so important. Maria is a warrior. I am a warrior. We can own our tragedies and turn them in to growth and support for one another.

[AlejandraXio]

April 2021, due to a severe lupus flare, I went to the ER due to dysphagia and ended up getting a feeding tube. A few days later I had a PRES seizure and got acute respiratory failure. I was on a ventilator 10 days and miraculously survived. My doctors told my family to start planning my funeral but here I am. I woke up with a tracheostomy and paralyzed. I had to relearn how to breathe, swallow, talk with a speaking valve, and can move in bed some. I still can’t walk but my next goal is to be able to transfer to a wheelchair. Lupus is a real battle. For those of you who haven’t faced the scary life threatening side of the disease please please do what you can to prevent it. It can leave so much damage if you survive it.

[lea]

I understand, don’t have Lupus, but have multiple sclerosis. Once diagnosed, you think medication is enough, but the reality hits. Stay strong anyone who’s suffering.

[MariaLopez-nqtf]

I found out when my kidney failed. But I knew something was wrong years before that. I kept hearing from doctors " your young and your fine. I had to fight for myself to get treatment. Push! You have to advocate for yourself.

[Sheloyigamer]

I’m trying to get a diagnosis; not that I want to have Lupus. But I have so many symptoms that come and go and change. Even with health insurance, I simply cannot afford constant visits and labs and no answers. Also feel like I am brushed off by doctors and even my own family. It’s so overwhelming to feel sick most of the time and have to fight to justify how I feel. Again, I don’t want to have Lupus or any other chronic condition but feeling horrible for the past 4-5 years with no help, no answers is debilitating

[denisedean]

I have lupus we will be alright do not lose hope keep God first place keep praying God Bless you Maria. 🙏🏾❤