20 posts tagged “lupus”

Instagram star Jokiva Bellard on living out loud with lupus: “You have to love yourself – you have to put yourself first”

Posted November 9th, 2017 by

Jokiva Bellard’s old wardrobe: Hoodies, jogging pants, loose clothes, long sleeves. In a word? “Tomboy. I didn’t want anyone to notice me.” She was covering up skin plaques caused by discoid lupus – which routinely brought stares and prying questions from the public.

Then came the facemasks. The model, who hails from New Orleans but now lives in Dallas, had to cover her airway with a mask to avoid infection because she was undergoing chemotherapy to treat lupus.

“I was like, ‘Dang it – now people are really looking at me,” she says. But that was a turning point. “It was like God was telling me, ‘I’m going to show you that you’re going to love yourself, even if I have to force you to notice it.'”

We recently talked with Jokiva about her experiences with lupus, finding her voice on social media, exposing her struggles and rising above online trolls.

Jokiva’s lupus diagnosis

Jokiva was 17 and a senior in high school when she started experiencing back pain and a rash, initially thought to be eczema. When the rash didn’t go away with prescription eczema cream and she also started having pain in her knees and legs, she saw multiple doctors and finally a rheumatologist who diagnosed her with lupus.

Lupus is a chronic autoimmune disorder where the immune system attacks healthy cells and causes flare-ups affecting the skin, joints, kidneys, heart and blood cells.

Jokiva has systemic lupus erythematosus (or SLE, the most common form of lupus, which affects many tissues in the body) and discoid lupus (which can cause rashes or skin plaques, especially on the face and scalp). She’s also had lupus nephritis, which attacks the kidneys, and two cases of kidney failure.

Jokiva’s mother also has lupus, which helped point doctors to the correct diagnosis. For many people with lupus, it’s a long road to diagnosis because of the various combination of symptoms people experience, from joint pain and hair loss to high blood pressure and lack of a monthly period (lupus mostly affects women of childbearing age, but men, children and teens can also develop the disorder, according to the Lupus Foundation of America).

“Literally in medical textbooks there’s only one paragraph describing lupus,” Jokiva says. “So when you go to the hospital, these doctors don’t know what’s going on with your body because they don’t even know what lupus is attacking, they don’t know that it is lupus that’s doing this.”

Viral video launches lupus advocacy

In 2016, Jokiva experienced her second kidney failure. Her face was completely swollen and her rashes were the worst they’d ever been. She gained about 60 pounds of fluid, and had blood clots in her lungs and ulcers in her stomach, which caused her to vomit blood.

“My face swelled to the point where I couldn’t breathe,” she says. She received chemotherapy to treat her severe lupus flare, which caused her hair to fall out.

Rather than turning inward, Jokiva decided to post a selfie video on Facebook. Through social media, she had started to connect with other women who were living with lupus or other conditions that affect their skin, hair or appearance (from acne and eczema to cancer requiring chemo).

“I really debated [posting the video], because right then at that moment, my rash was completely bad, all over my face – I was to the point where blood clots were coming out of my lips,” she says. “And because of the fact that people used to look at me in public like I was so disgusting. But I kept having my husband tell me, ‘You’re so beautiful,’ and my mom, she was telling me, ‘Oh forget what anybody else says.'”

“So I was like, let me just post a picture and tell my story to my friends on Facebook and see how they feel,” she says. “I made a video and said, ‘Make sure you guys take your medicine and listen to your doctors because life is too short, because you don’t know what’s gonna happen.’ That first night, the video had 114,000 views. It was just for my Facebook friends but it ended up circulating, they ended up sharing it. That really started my advocacy for lupus, and it turned into Instagram.”

100K strong on Instagram

These days, Jokiva has nearly 100,000 followers on Instagram (@_indianrosee) and she candidly shares everything from throwback photos to present-day selfies from a hospital bed. She aims to tell all women – with lupus or other conditions, or just fans who stumbled upon her page – to love themselves.

“I’m telling them that you can still be comfortable. You can have bald spots on your head because you have to do chemotherapy, but I still want you to know that in that skin that you’re in… You think that you’re not beautiful? You are still beautiful.”

She says that self-love and self-care are especially important for people with lupus. “Some people with lupus or certain diseases don’t understand that, to calm this disease down, you have to put yourself first – that means loving yourself inside and out.” She says she’s fortunate to have a good support system, including a husband who is “perfect.”

Dealing with negativity

Jokiva has faced her share of nasty comments, in-person and online. “Some people thought I had acid thrown on my face, or I had poison ivy. I started getting comments on Instagram like, ‘She should kill herself – she’s ugly as hell.'”

Her response? “Now that I love myself, I don’t care what anybody says about me. I let it roll off my shoulders… I had to build that confidence and it was not easy. It took me a whole year to build that confidence. I had a couple times where I was gonna delete my Instagram but there’s more love than hate – I had to realize that.”

Jokiva says a handful of negative people don’t have the power to cut her off from a community that looks up to her and her message.

“It’s not going to be easy — you’re not going to wake up tomorrow and love yourself,” she says. “When you get that empowerment, that self-love, everyone around you starts to see that and they look past the skin disease, they look past that disease that you’re walking with, anything that you have – they look past that and see the person that you are. You can be who you want to be. Don’t set aside your goals just because something is trying to block your blessing. Just keep pushing, just keep moving forward.”

Jokiva says she’s been inspired by the most caring healthcare professionals who’ve helped her over the years and even shed tears with her. Lupus interrupted her schooling and career plans after high school, but now she’s getting back on track to pursue a career as a nurse or nurse practitioner, and she’s also working on a book of her poems and sketches.

Join PatientsLikeMe to connect with and learn from nearly 29,000 members with SLE, more than 2,000 members with discoid lupus, and 1,700 members with lupus nephritis.

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From tomatoes to turmeric: Can foods fight inflammation?

Posted October 26th, 2017 by

Inflammation is a hot topic. What’s it all about? And what’s the scoop on certain diets, foods and supplements, such as turmeric, when it comes to fighting inflammation?

What is inflammation?

Not all inflammation is “bad.” Acute inflammation is part of the body’s natural way of defending itself from foreign substances like viruses, bacteria, cuts and splinters. It may cause redness, swelling, heat and/or pain. The upside is, these symptoms are a sign that the body is responding after an injury or infection by triggering white blood cells and disease-fighting chemicals.

But some “other” kinds of inflammation — like chronic inflammation (which may include constant low-grade or systemic inflammation) and inflammation from autoimmune disorders (where the body attacks its own healthy cells as if they’re foreign) — doesn’t always show visible or obvious symptoms and can play a more long-term and complex role, according to Mayo Clinic.

Which diseases or conditions does it affect?

Mounting research shows that inflammation is a common underlying factor (and possibly a cause) in many — perhaps even all — diseases.

You’ve probably heard about the role of inflammation in arthritis or heart health. But researchers and doctors have also studied inflammation’s link to a wide range of other diseases and conditions, including cancerdiabetesAlzheimer’s diseasemultiple sclerosis (MS), Parkinson’s disease (PD), major depressive disorder (MDD), post-traumatic stress disorder (PTSD) and ALS (note: in the case of ALS and some other conditions, researchers are still determining whether some inflammation may be protective rather than harmful, so more research is needed).

Over the past decade, scientists have also started to identify certain genes associated with inflammation, and research on that front continues.

What can food do?

Some people follow an “anti-inflammatory diet,” but the science behind these particular diets does not clearly support the theory that they thwart inflammation, and doctors advise being wary of the health claims they make.

That said, taking steps to maintain a healthy weight and eat a variety of foods with anti-inflammatory properties (rather than follow a certain “Diet” with a capital “D”) may benefit your health.

“Many experimental studies have shown that components of foods or beverages may have anti-inflammatory effects,” says Dr. Frank Hu, professor of nutrition and epidemiology at the Harvard School of Public Health.

The team at Harvard says these foods have anti-inflammatory properties:

  • Tomatoes
  • Olive oil
  • Green leafy vegetables, such as spinach, kale and collards
  • Nuts like almonds and walnuts
  • Fatty fish like salmon, mackerel, tuna and sardines
  • Fruits such as strawberries, blueberries, cherries and oranges

On the flip side, they say, some foods promote inflammation — so try to avoid or limit these (hint: they’re already foods with a pretty bad rap):

  • Refined carbohydrates, such as white bread and pastries
  • French fries and other fried foods
  • Soda and other sugar-sweetened beverages
  • Red meat (burgers, steaks) and processed meat (hot dogs, sausage)
  • Margarine, shortening and lard

Talk with your doctor or a registered dietician about a healthy eating plan with your health condition(s) in mind.

What’s the deal with turmeric?

There’s currently a lot of buzz around turmeric and some other supplements believed to help fight inflammation. Turmeric, a plant related to ginger, is a common spice known for its gold color and use in curry powder.

On top of being used as spice, it can be taken as a supplement. The main anti-inflammatory ingredient in turmeric is curcumin, which is available as a supplement on its own (the content of curcumin in turmeric spice is only around 3%, so curcumin supplements may pack more of an anti-inflammatory punch). One study found that curcumin may have the same anti-inflammatory effects as NSAID pain relievers, such as aspirin, ibuprofin, (Advil/Motrin) and naproxen (Aleve).

Preliminary studies have shown promise for curcumin’s use in people with ulcerative colitismultiple myelomalupus and depression. However, there’s still a lack of conclusive research on the effects of turmeric or curcumin in people with many other conditions, so these supplements typically aren’t recommended as part of a treatment plan at this point. Additional studies on curcumin are currently underway for people with some forms of cancer and neurodegenerative diseases, such as ALS, MS and PD.

Talk with your healthcare provider before starting any new vitamin, supplement or treatment.

What about other supplements?

Overall, the potential role of dietary supplements is “largely uncharted when it comes to carefully done clinical trials for safety and effectiveness,” according to Brent Bauer, M.D., of the Mayo Clinic. Dietary supplements are not regulated by the U.S. Food and Drug Administration (FDA) for safety and effectiveness. Keeping that in mind, here are some other supplements with possible anti-inflammatory effects that researchers have studied to some extent, the Mayo Clinic says:

  • Cat’s claw (Uncaria tomentosa) — This could ease rheumatoid arthritis joint pain and osteoarthritis knee pain during activity, but more research is needed.
  • Devil’s claw (Harpagophytum procumbens) — It’s commonly used in Europe and may be effective in the short-term treatment of osteoarthritic pain.
  • Mangosteen (Garcinia mangostana) — Made from the mangosteen fruit, this supplement may have anti-allergy, antibacterial, antifungal, antihistamine and anti-inflammatory qualities, but more research in humans is needed.
  • Milk thistle (Silybum marianum) — This may help improve organ function in people with cirrhosis, a chronic liver disease. It may also be helpful in treating chronic hepatitis. But more research is needed before it can be recommended.

“My best advice concerning chronic inflammation is to stay tuned,” says Dr. Bauer. “This is a huge area of interest in the medical world and there are bound to be discoveries down the road that can improve well-being and the quality of health.”

On PatientsLikeMe

Hundreds of patients report using turmeric for a wide variety of health reasons — see what they have to say. Join the community for even more details on the treatments patients have tried and to learn and share about nutrition with your condition.

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