autoimmune disease

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From Lupus Diagnosis to Fearless Patient Advocate

Meet Alyshia Alyshia Merchant was always healthy, but as a busy mom, she did experience fatigue from time to time. However, it wasn’t until she was out to dinner in 2012 when the early signs of her condition became more apparent. Her friends pointed out a rash that had spread across her cheeks and nose. This innocuous comment would soon lead her to a life-altering discovery that she had Lupus nephritis, an autoimmune disease that threatened her health and quality of life. After multiple conversations with doctors who told her to get more sleep and take more vitamins, it took a fainting episode at work that landed her in the emergency room for her condition to be taken seriously. After a few tests, bloodwork, and a biopsy, her nephrologist officially diagnosed Alyshia with Lupus. Alyshia is not alone in having trouble getting an accurate diagnosis. Lupus can be challenging to identify because it impacts many different parts of the body and presents in a variety of ways. The Lupus Foundation of America has compiled a list of common symptoms and recommends you advocate for how you feel when you speak with your doctor. They also offer a helpful symptom questionnaire …

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Is there a medical gender gap? The not-so-brief history of sexism in medicine

As Women’s History Month comes to a close, take a look at the gender gap in health care and how the centuries-old notion of “hysteria” may still taint women’s experiences today. History of “hysteria” Turns out, there’s nearly 4,000 years worth of evidence that people believed women’s illnesses stemmed from the uterus or sexual issues. An Egyptian papyrus dating from about 1900 B.C.E. includes recipes for medicines to coax a ‘wandering uterus’ back to its proper place in the body. The ancient Greek philosopher Plato described the uterus as an animal, which roamed inside women’s bodies, causing symptoms as it moved. In the Middle Ages, many believed in humoural medicine, which linked so-called “hysterical symptoms” to the retention of “sexual fluid” in women. During the late 1800s, belief and scientific interest in hysteria reached a fever pitch. French neurologist Jean-Martin Charcot proposed that hysteria was a nerve disease similar to multiple sclerosis and not unique to women. Sigmund Freud argued that hysteria was rooted in “unconscious conflicts” or embarrassment, which converted into bodily symptoms. He called this “conversion hysteria.” In the early 1900s, hysteria got lumped under the broad category of “neurosis” and the term gradually fell out of medical use but the …

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PatientsLikeMe and Merck Establish Health Information Collaboration Focused on Psoriasis

Patient-Based Research Aims to Produce New Insights Into Most Common Autoimmune Disease in U.S. CAMBRIDGE, Mass. — Aug 13, 2012 — PatientsLikeMe announces it has entered into a collaboration with Merck, known as MSD outside the United States and Canada, to evaluate the impact of psoriasis on patients and to inform a novel approach to improving outcomes. “A broader and more human view of psoriasis will help patients and their doctors understand the true nature of the disease,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “We’re excited to collaborate with patients and Merck to uncover insights about the disease that may lead to better approaches for patients managing their condition day-to-day; providers creating care plans; and researchers developing treatments.” According to the National Psoriasis Foundation, psoriasis is a non-contagious, chronic, autoimmune disease that appears on the skin and is associated with other serious health conditions including diabetes, heart disease and depression. It is estimated to affect over 7.5 million people in the United States. “Effective use of health information provides the path forward to patient-centered care and personalized medicine,” said Dr. Sachin H. Jain, Chief Medical Information and Innovation Officer, Merck. “Our collaboration with PatientsLikeMe is an important part of Merck’s strategy to …

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Psoriasis Isn’t Contagious…But Awareness Is

Did you know that psoriasis cannot be transmitted through skin-to-skin contact – or any other type of interaction? August is Psoriasis Awareness Month, an annual event dedicated to highlighting the life-altering impact of psoriasis and dispelling the many myths surrounding it.  Beyond the misperception that it may be contagious, another major misunderstanding is that psoriasis is “just a skin condition.”  In fact, up 30% of people with this serious autoimmune disease will develop psoriatic arthritis, which can cause chronic pain and swelling in the joints. Throughout 2012, PatientsLikeMe has been interviewing members who are blogging about life with psoriasis in order to shed light on this highly visible and often stigmatized disease, which affects as many as 7.5 million Americans and is the most common autoimmune condition in the US.  How have they managed both the physical and emotional challenges?  Check out our inspiring interviews with: Lissa of “Psoriasis Girl’s Point of View” Alisha of “Being Me in My Own Skin” Jessica of “Jessica and Psoriasis” Joni of “Just a Girl with Spots” These four brave ladies are just the tip of the iceberg, however.  1,820 patients are sharing their experiences with psoriasis at PatientsLikeMe, while 730 patients are sharing …

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What Do You Know About Celiac Disease?

Gluten-free products are now readily available in many grocery stories – and for good reason. One in 133 Americans has celiac disease, an autoimmune digestive disease that damages the villi of the small intestine and interferes with the absorption of nutrients from food. As a result, people with celiac disease cannot tolerate gluten, a protein that is found in wheat, rye and barley products. On September 13th, the United States recognizes Celiac Awareness Day as a result of a resolution passed by the Senate. The date has special meaning as it’s the birthday of Dr. Samuel Gee, the British pediatrician who offered the first full clinical picture of celiac disease in 1888 and also theorized that a special diet may help. Thanks to his research as well as ensuing medical advances, it is now possible to be tested for celiac disease antibodies and undergo further diagnostics, including a genetic test and/or biopsy. There are also numerous products, recipes and resources to support those on a gluten-free diet. The problem, however, is that many people go undiagnosed. According to the National Foundation for Celiac Awareness (NFCA), which sponsors their own awareness month in May, 95% of celiac patients are undiagnosed or …

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Put Your Psoriasis Story on Video

The most common autoimmune disease in the US, psoriasis affects as many as 7.5 million Americans. Yet many people think it’s just “a skin thing.” To help debunk this misunderstanding and show all the ways psoriasis impacts one’s life, the National Psoriasis Foundation is holding the first-ever film festival for psoriasis and psoriatic arthritis, a painful joint condition that up to 30 percent of people with psoriasis develop. The Spotlight on Psoriasis and Psoriatic Arthritis Online Film Festival invites you to show what life is really like with psoriatic disease, including all the ups and downs, frustrations and realizations. Not sure how to get started? You may want to think of a genre for presenting your story first. The festival invites submissions in seven different categories: action, youth, animation, horror, comedy, documentary and music video. All videos submissions are due on August 28, 2011. Two semi-finalists will be chosen in each category for online voting by the public, beginning on August 30, 2011. Anyone with any condition can watch the videos and vote on their favorites. Then on September 6, 2011, the video with the most online votes across all seven categories will be named the Festival Grand Prize winner …

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