11 posts tagged “patient advocate”

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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Is seasonal affective disorder real? Some call it “folk psychology”— others say it’s legit

Posted March 9th, 2018 by

Mental health experts first recognized seasonal affective disorder (SAD) — or depression that follows a seasonal pattern — in 1987. Some recent research has called SAD into question. What’s with the clashing theories? What do U.S. healthcare experts say, as of today? And how do people treat SAD? Read on.

Questioning SAD

Both culturally and clinically, most people have accepted SAD as a type of depression since it was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) about 30 years ago.

But in January 2016, the journal Clinical Psychological Science published the results of a large-scale U.S. survey that questioned the validity of SAD. The authors’ conclusion? “Depression is unrelated to latitude, season, or sunlight. Results do not support the validity of a seasonal modifier in major depression. The idea of seasonal depression may be strongly rooted in folk psychology, but it is not supported by objective data.” The authors recommended that mental health professionals should possibly stop officially recognizing a seasonal aspect in the diagnosis of major depression.

The DSM (diagnostic manual) still includes SAD, but the 2016 survey led some psychological experts to declare that there’s “no evidence that levels of depressive symptoms vary from season to season.” It also caused some confusion about the legitimacy of SAD in the media, and led to headlines like “Seasonal affective disorder is probably a myth” and “SAD doesn’t exist — here’s the science.”

While no one is questioning the validity of depression as a diagnosis or real condition, the 2016 study has muddied the waters around whether depression may be associated with seasons.

Tip: PatientsLikeMe is a great place to track how you’re feeling each day and look back at previous seasons or years to spot any possible trends (and share them with your doctor or provider).

NIHM: SAD is real, let’s tweet about it

The National Institute of Mental Health (NIMH) still considers SAD a legitimate type of depression, and outlines the symptoms, risk factors and treatments here. It’s so real (and important) that they recently hosted a Twitter chat on the topic of SAD (see an archive of the chat here for non-Twitter users). Psychiatrist Matthew Rudorfer, M.D., chief of the Somatic Treatments Program at NIMH, helped answer questions in the chat on Feb. 20.

Some key stats and facts shared in the Twitter chat?

  • The exact causes of SAD are unknown. Researchers have found people with SAD may have imbalance of serotonin, a chemical that affects mood. Their bodies also make too much melatonin (a hormone that regulates sleep), and not enough vitamin D.
  • Regionally, the rates of SAD increase with more northern latitude in the U.S. For example, rates of SAD ranges from slightly over 1% in Florida to 9% in New England or Alaska. [The 2015 study NIMH cites seems to contradict the findings of the 2016 survey that found no correlation with latitude or season.]
  • SAD typically hits in the late fall and early winter and goes away during the spring and summer, but depressive episodes linked to the summer can occur (yet they’re less common)
  • SAD is diagnosed four times more often in women than men.

The bottom line? “Seasonal affective disorder is a form of depression, a serious illness,” NIHM says. “If you or someone you know may have depression, talk to a health care provider. Don’t try to treat depression on your own with dietary supplements or other products.”

NIMH says there are four major types of treatment for SAD, which may be used alone or in combination (talk with a doctor or licensed mental healthcare provider to make a treatment plan):

  • Medication
  • Light therapy
  • Psychotherapy
  • Vitamin D

On PatientsLikeMe, more than 800 people say they have seasonal affective disorder, with nearly 200 of them saying SAD is their primary condition. The treatment that members with SAD have reported the most frequently is light therapy.

Interestingly, some publications that labeled SAD “folk psychology” back in 2016 shared a different message following the recent NIMH Twitter chat about SAD: “It’s real — and it’s serious.”

What’s your experience with SAD or seasonal depression? Do you think SAD is its own type of depression? Join PatientsLikeMe to talk about topics like this with with our mental health community, including 20,000+ people living with depression.

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