12 posts in the category “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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Lupus and vitamin D deficiency – get the lowdown

Posted March 8th, 2018 by

Vitamin D is nicknamed “the sunshine vitamin” because catching some rays on bare skin triggers your body to produce it naturally.

But what if lupus-related sun sensitivity (not to mention the winter weather) restricts your sun exposure? Take a peek at some key info on vitamin D deficiency, plus learn some dietary sources of this important nutrient.

What are the effects of limited sunlight?

Vitamin D deficiency is a common health issue in general, and reduced exposure to sunlight is one of the main factors. Researchers estimate that almost 50% of the world’s population – across all ethnicities and age groups – have a vitamin D deficiency. When the sun’s rays hit bare skin, it signals the body to produce its own vitamin D.

Getting vitamin D via sunshine can be especially tricky for some people with lupus who are taking steps to limit sun exposure or protect the skin with sunscreen and clothing. Ultraviolet (UV) light from the sun or artificial light sources can make lupus worse in 40 to 70% of people with the condition, according to Lupus.org. Sunlight may exacerbate skin disease or skin-related symptoms in people with lupus, such as the “butterfly” rash, discoid lesions and photosensitivity.

Not everyone with lupus is affected by skin problems or sun sensitivity, so completely avoiding sunlight may not always be necessary. Talk with your doctor about sun safety and healthy levels of sunlight, in your case, as well as other factors in vitamin D deficiency (such as darker skin, kidney problems and obesity) and other good sources of vitamin D (read on!).

Why is vitamin D important?

Vitamin D plays an important role for all people. Here are just a few of the health benefits for the general population:

  • Helps the intestine absorb calcium
  • Supports bone health and helps prevent osteoporosis
  • Helps with muscle movement and nerve function
  • Supports immune function and reduction of inflammation

For those with lupus, vitamin D is also vital because:

  • Low levels of vitamin D may increase the risk of kidney complications or kidney failure
  • Some initial research shows that vitamin D may play a role in controlling lupus symptoms and bolstering kidney function (but more research is needed on the role of vitamin D in lupus treatment)

What are some other sources of vitamin D?

Talk with your doctor about testing your blood level of vitamin D and the best sources of this nutrient for you. For the general population, good sources of vitamin D beyond sun exposure include:

  • Foods that contain it naturally, such as the flesh of fatty fish like salmon, mackerel and tuna (small amounts are also found in beef liver, cheese, egg yolks and mushrooms)
  • Foods fortified with vitamin D, such as milk, yogurt and cereal (fortified foods provide most of the vitamin D in the American diet)
  • Oral vitamin D2 or D3 supplements, taken as directed by a doctor, usually in the case of vitamin D deficiency. Talk with your provider before taking a new supplement.

The most common test for vitamin D deficiency is called 25-Hydroxyvitamin D (or ’25-OH Vit D’).

How do you get your vitamin D? Add a comment or join PatientsLikeMe today to talk about this topic with 10,000+ members living with lupus.

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