9 posts in the category “lupus”

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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Why these 5 Olympians with health conditions are #1 in our hearts

Posted February 28th, 2018 by

The 2018 PyeongChang Olympic Games have come to a close. Did you happen to catch any of these 5 Olympians with health conditions (recently highlighted in The Mighty)? Their performances were inspiring — but their perspective on living with illness is what’s really golden.

U.S. pairs figure skater Alexa Scimeca-Knierim developed a rare, life-threatening gastrointestinal disorder that caused episodes of vomiting and severe weight loss and has been hard to diagnose. She had three abdominal surgeries and has shown her scars on Instagram.

After a long and painful recovery, Alexa was able to return to skating. “My whole outlook changed,” she told Team USA. “I was grateful to have the chance to fall instead of stressing out over falling or not. Was a fall as big of a deal as a drain getting pulled out of me? No, not at all. I was grateful.”

In PyeongChang, Alexa and her husband/skating partner, Chris Knierim, took home the bronze medal in the figure skating team competition and placed 15th in the pairs competition.

Alexa shared this photo with SELF for a video about her health problems and extraordinary road to the Olympics.

American long-track speed skater Brittany Bowe sustained a concussion when she collided with another skater in 2016. Later, after fainting multiple times, she was diagnosed with post-concussion syndrome and a lesser-known condition called “POTS” or postural orthostatic tachycardia syndrome. POTS can be a years-long or potentially lifelong condition, and it affects the body’s ability to control blood pressure or heart rate as it should when you stand up, which can cause dizziness, lightheadedness or fainting.

“There would be times where people I’d not seen in a while [would say], ‘Oh you look great, you look so healthy…’ And I’m just dying inside because I know my head isn’t on my shoulders where it normally sits,” Brittany said in a video she shared on Instagram. (Her comments reminds us of what many patients with invisible illness hear from “the normals”: “But you look so good!”). She received specialized care and coaching for people with POTS and was able to qualify for the 2018 Olympics.

Canadian snowboarder Spencer O’Brien started feeling serious joint pain and stiffness in late 2012, and she originally attributed it to normal wear and tear from her sport. It took until 2014 to get the right diagnosis (rheumatoid arthritis) — and she went through bouts of depression before finding out what was wrong.

“A big lesson I learned during that experience was to be an advocate for my health,” Spencer told The Inertia. “I think our intuition is so strong, like I knew something was wrong with me beyond the injuries, and I did voice that, but we ran a number of tests, which came back clean.” She had to push for additional tests, which pointed to RA and helped her get on the right track with her treatments so she could continue her sport.

U.S. cross-country skier Kris Freeman was diagnosed with type 1 diabetes in 2000 (at age 19) after a routine blood test run by a U.S. ski team physiologist. PyeongChang was his fourth Olympics appearance. During the 2006 Olympic Games, The New York Timesprofiled Freeman and his unique treatment/training regimen. (Little known fact: Insulin is on the anti-doping list, and athletes who need it for medical treatment, like Kris, have to apply for a waiver — “one more hurdle that comes with managing diabetes,” The Times noted.)

“The last few years have been tough with some pretty public setbacks with my diabetes,” Kris told Lilly Diabetes (he’s a speaker at their diabetes summer camps for kids). “But, I’ve been able to stay positive and maintain my nutrition and overall diabetes management, which has helped me tremendously. I want to show everyone, especially children, that they can and should keep reaching for their dreams.”

Marc Oliveras, an alpine skier from Andorra, was diagnosed with lupus (SLE) in 2014 and took a break from his sport so he could treat the autoimmune disorder, which was affecting his skin, kidneys and blood. “After a long recovery and a difficult summer, where I had to start first knowing the unknown [my disease], being able to compete is already a reward,” he said in his athlete profile.

It’s worth reading The Mighty’s article to the end, because the author reminds people living with health conditions that everyone’s illness and situation is different: some people may have milder forms of a disease, respond better to treatment, or have better access to world-class care.

Also, the media tend to share a boiled-down or glossed-over features on athletes triumphantly “overcoming” their condition, rather than showing the everyday challenges or realities of managing their condition while training for their sport. Fortunately, athletes like the ones above are raising awareness: they’ve lived, breathed and trained with their condition, and they feel grateful to even be able to compete. That kind of perspective is pure gold.

Do any of these quotes or stories strike a chord or inspire you? Join the conversation on PatientsLikeMe.

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