LOL: Lupus Out Loud

woman hospital patient sitting upright on stretcher
LOL?! Lupus Out Loud is a new online movement and video developed to encourage people with lupus to speak “out loud” about their symptoms. The movement was inspired by the results of a recent Roper survey that found over half (52 percent) of patients with lupus surveyed reported that they minimize their symptoms when speaking with their doctor.

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“Common lupus symptoms – including fatigue and pain – can be invisible to others, so many patients feel isolated and alone. Further, in an effort to not burden their family or physician, patients often underplay what they are actually experiencing,” said Susan Manzi, MD, MPH, Co-Director of the Lupus Center of Excellence and Chair of the Department of Medicine of West Penn Allegheny Health System.

Lupus Out Loud encourages lupus patients to pledge to make an appointment with their doctor and to speak frankly about the true impact of lupus on their daily lives. In addition, Lupus Out Loud’s new video “Voices” features several lupus patients across America and illustrates that the collective voice is more powerful than one voice.

Lupus facts:

• Prevalence: About 90 percent of people diagnosed with lupus are women[2]; the disease is more common in women of African American, Hispanic, Asian, and Native American descent than in Caucasian women.

• Symptoms: Affect multiple parts of the body, range from mild to severe and may come and go over time.

• Diagnosis: Challenging and may take years and a number of doctor visits to confirm.

Patients who participated in the filming of “Voices”, as well as Dr. Susan Manzi, a leading clinician and scientist in Rheumatology, are available to discuss how to communicate more effectively with physicians, friends and family, and the benefits of talking frankly.

“As a doctor, I want my patients to be as open as possible about how lupus is impacting them,” says Manzi. “Lupus Out Loud encourages patients to put lupus front and center and to speak out about all of their symptoms. This communication is critical, because the more information I have, the better care I may be able to provide.”

The video titled “Voices” is a creative depiction of how the collective voice can inspire change. It was produced to encourage patients – all across America, all at once – to speak openly about their symptoms to their friends, families and most importantly, to their doctors.

Approximately 332,000 Americans have systemic lupus erythematosus, or SLE, a chronic, autoimmune disease that can range in severity, primarily affecting women of childbearing age. For these patients to receive optimal care, it’s essential they have a strong relationship and partnership with their doctor.

Additionally, more information about lupus can be found at www.usinlupus.com.

What Your Looks Say About Your Health

African woman with hand on boyfriend's shoulder
Is it true that bad looks can equal bad health? When your body is healthy, you tend to look attractive and more youthful.

But oddly, people tend to point their fingers at things like aging when it comes to less attractive things, like hair loss, unsightly nails and skin problems, according to Health.com.

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In fact, these flaws can actually be signaling underlying health issues, says integrative medicine specialist Molly M. Roberts, M.D., of the Institute for Health & Healing, in San Francisco, and president of the American Holistic Medical Association.

“It’ll start by whispering, then it’ll start talking, and, if you don’t pay attention, it’ll start yelling and shouting, and then you’ve got an illness,” she says.

Here are just a few of the noticeable signs of potential health problems beneath your skin’s surface.

Hair Loss
The Problem: Thyroid disorder

Pregnancy, stress, disease, medications and changes in hormones all can contribute to hair loss.  But among women in particular, dry, thinning hair may be a sign of an underactive or overactive thyroid. A simple blood test can check whether the body is making normal amounts of thyroid hormone.

Cracked Lips
The Problem: Sjögren’s syndrome

Severely cracked, dry lips may be a reaction to medication, an occupational hazard (if you’re a brass musician), or a symptom of allergy, infection or other conditions. Cracking at the corners of the mouth may also be a symptom of Sjögren’s (pronounced SHOW-grens) syndrome, an immune system disorder. Sjögren’s causes dry eyes and dry mouth, as well as joint pain and dry skin. As many as 4 million Americans — mostly women — have this condition.

Dark Skin Patches.
The Problem: Diabetes/Cancer

A ring of dark skin at the back of the neck may look like it’s crying out for a good scrubbing, but it may be acanthosis nigricans, a condition in which the skin appears darker and thicker — even velvety — along body creases. 

People with insulin resistance, diabetes, obesity or, in rare cases, cancer, can develop these dark patches. Although not a definitive sign of diabetes, “It makes you think twice and do more workup,” says Heather Jones, a nurse practitioner at Oregon Health & Science University, in Portland, and a member of the Dermatology Nurses Association board of directors.

Dental Problems

The Problem: Heart disease

Bad teeth and gums aren’t just signs of poor oral hygiene. In 2010, Scottish researchers reporting in the British Medical Journal found that tooth brushing lowers the risk of heart disease. Tooth loss also can signal osteoporosis. Missing teeth may mean jawbone density can no longer support a mouthful of pearly whites.

Butterfly Rash
The Problem: Lupus

A rash is like a red flag. It’s your body’s way of saying that something is not right. There are all kinds of rashes, of course, but one in particular stands out. It stretches across both cheeks in the shape of a butterfly and has a sunburn-like appearance. This rash is a classic symptom of lupus, an immune-system disorder that affects the skin, joints, blood and kidneys.

Yellow Eyes
The Problem: Liver disease

In adults, eyes that are white instead of yellow can be a sign of liver disease, such as hepatitis or cirrhosis. It can also mean that the ducts that ferry bile away from the liver are blocked. Anyone with yellowing of the eyes should see their physician for further evaluation.

Swollen Feet
The Problem: Heart failure

Shoes too snug? Many conditions, including sprains, strains, injuries and infections, can cause feet and ankles to balloon, such as pregnancy, obesity and certain medications. However, certain diseases can cause fluid retention as well. If you’re one of the five million Americans with heart failure, you may be retaining fluid because of your heart’s poor pumping action. Swelling in the legs, ankles and feet is a classic symptom of this condition.

Unsightly Nails
The Problem: Psoriasis/Arthritis

Nails that are pitted, deformed or discolored (yellow-brown), or nails that thicken or separate from the nail bed, can point to many health problems, including psoriasis, arthritis and alopecia areata, a type of patchy hair loss. 

Pitting has also been reported in patients with Reiter’s syndrome, a type of arthritis, and incontinentia pigmenti, a genetic skin condition.

Excessive Body Hair
The Problem: PCOS

Hair where you don’t want it to be is embarrassing, but it also can be a sign of polycystic ovary syndrome (PCOS), a common cause of increased hair growth in women of childbearing age, can cause infertility and infrequent, irregular or absent periods. More than 70 percent of women with PCOS have hirsutism, or excess hair growth, typically appearing on the face, chest, stomach, back, hands or feet.