3 posts tagged “patientslikeme and lupus”

Lupus Awareness Month: Lupus Warrior Jeanette recaps her D.C. advocacy trip

Posted May 3rd, 2018 by

In honor of Lupus Awareness Month, meet PatientsLikeMe member Jeanette, who recently traveled to the U.S. Capitol to advocate for lupus research funding. (Psst — here are some ideas on how to “Go Purple” this May and raise awareness of lupus!)

“I try to help the world,” says Jeanette Alston-Watkins (JeanetteA6872). The full-time working mom of two was diagnosed with lupus in 2005. She’s on the 2018 Team of Advisors (catch a quick video about her here) and is a passionate advocate for the Lupus Foundation of America.

Lupus Advocacy Summit recap

Jeanette recently attended the Lupus Foundation of America’s 2018 National Advocacy Summit in Washington, D.C. for the second year in a row. What happened at the summit? Take a peek at the agenda and read on!

“We met many young Lupus Warriors from around the country and they told us their stories and their fight with this disease,” Jeanette says.

On Day 1 of the two-day summit, Jeanette and other advocates heard from lupus researchers and drug developers about clinical trials for lupus treatments, particularly for childhood lupus and lupus nephritis (PatientsLikeMe has a Clinical Trial Finder where you can search by condition, location and more). Attendees also learned advocacy tips they can use year-round, practiced telling their personal stories and prepped for meeting with members of Congress to rally for lupus resources.

On Day 2, they converged on Capitol Hill to meet with legislators and make the case for lupus funding.

The “ask” from Congress

Last year, advocates like Jeanette helped secure $13 million for lupus research and initiatives. This year, lupus advocates asked U.S. Senators and Representatives for another annual investment in federal funding for lupus. Specifically, they’re seeking:

  • $7 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC). This helps the U.S. keep tabs on the national impact of lupus (in terms of cost and quality of life), and supports programs for patients and healthcare providers.
  • $2 million for the National Lupus Training, Outreach & Clinical Trial Program at the Office of Minority Health (OMH). Officials there help educate and enroll people in clinical trials of possible new treatments. Lupus can affect anyone, but non-white people face a higher risk, so it’s vital to include minorities in clinical trials.
  • $10 million for the Lupus Research Program at the Department of Defense (DOD). Until last year, the DOD’s medical research program (called the Congressionally Directed Medical Research Program) did not have a lupus-specific program. Now that it’s an area of focus (thanks to years of advocacy), lupus researchers are looking to do several specific studies about the condition.

In addition, advocates at the summit asked Congress for $38.4 billion for the National Institutes of Health — a $2.4 billion increase over last year — as a general investment in medical research that all health groups are seeking this year.

“The trip to D.C. was amazing and successful,” Jeanette says, noting that most members of Congress were receptive to lupus advocates’ “ask.” “Great time, great experience and great people all around the country advocating for lupus.”

Let’s hear it for Jeanette and other advocates! Interested in getting into advocacy? On PatientsLikeMe, more than 2,000 members with lupus include advocacy among their interests on their profile — join the community today to connect with Jeanette and others who want to make a difference!

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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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