Health



Tag: PATIENT VOICES

January 15, 2009, 12:05 pm

The Voices of Psoriasis

INSERT DESCRIPTIONThe faces and voices of psoriasis. (Photography credits: David Walter Banks, Meenu Bhardwaj, Ken Cedeno, Ryan Collerd, David Eulitt and Shana Sureck for The New York Times)

Many chronic diseases are invisible, taking a toll on the individual but not immediately apparent to outsiders. But the skin condition psoriasis causes obvious changes leading to itchy, scaly skin on the hands, legs, scalp and other body parts. Not only is it painful, but it can also be isolating, because sufferers are embarrassed by their appearance.

Today’s Patient Voices by Karen Barrow focuses on seven men, women and children with psoriasis, a chronic disease of the immune system that appears on the skin, usually as thick, red, scaly patches. Many people with psoriasis also develop psoriatic arthritis. According to the National Institutes of Health, as many as 7.5 million Americans have psoriasis. Read more…


December 17, 2008, 1:46 pm

Voices of Restless Leg Syndrome

INSERT DESCRIPTIONThe faces of R.L.S. (Photos: Chris Machian, Jessica McGowan, Kevin Moloney, Janie Osborne, Ben Sklar and Allison V. Smith for The New York Times)

When I first heard the term “restless leg syndrome” years ago, I thought it was a joke. It’s not an uncommon reaction. Over at the Freakonomics blog, Stephen J. Dubner saw a commercial about the disorder and thought it was a “Saturday Night Live” spoof.

But the people who have the problem aren’t laughing. Read more…


December 4, 2008, 10:54 am

The Voices of Multiple Sclerosis

Most people have heard of multiple sclerosis but have little sense of what the disease really is or how it affects the lives of those who have it. The latest Patient Voices from my colleague Karen Barrow sheds needed light on those living every day with the disease.

You’ll hear from Mimi and Jonathan Mosher of Mechanicsvile, Va., and the challenges Mrs. Mosher’s MS presents for their relationship. Ann Marie Johnson, 37, of Brooklyn, N.Y., talks about dating with MS, while Jim Minehan, 63, of Scottsdale, Ariz., tells how his bleak outlook following his diagnosis ended his marriage, but eventually led to acceptance and an appreciation for the small things in life.

To hear these stories and others, please listen to Patient Voices: Multiple Sclerosis, and then join the discussion below.

To hear the many other Patient Voices features — on infertility, AIDS, bipolar disorder, prostate cancer and other health issues — see the “related links” below, or click on Patient Voices.


November 6, 2008, 10:23 am

The Voices of AIDS and H.I.V.

INSERT DESCRIPTIONThe Faces of AIDS and H.I.V. (Perry Baker, Ken Cedeno, Josh Ritchie and David Goldman for The New York Times, James Estrin/The New York Times)

Few illnesses are as feared as AIDS and infection with H.I.V. And once diagnosed, many people must cope not only with the illness itself, but the stigma of carrying a communicable, deadly disease.

In the latest Patient Voices, my colleague Karen Barrow has gathered the stories of eight people with AIDS and H.I.V. infection. She begins with the moving story of Robin Grinsted, 50, of Swansea, S.C., who contracted H.I.V. from her husband. The diagnosis shattered her prejudices about the disease.

“At one time I said everybody that had H.I.V. or AIDS ought to be put on an island,” she said. “I’m so ashamed I ever said that.”

After her diagnosis, she cried and “scrubbed and scrubbed” in the shower. She confided her illness to a friend, who gossiped about it in her small town. She now feels isolated and ostracized from her church.

“They’re not accepting,” she said. “The phrase comes to my mind, ‘What would Jesus do?’ I know what he would do. He would put his arms around me.”

Friends have told her they would kill themselves if they were in her situation.

“I say, ‘No, you wouldn’t,’ ” she said. “You like to wake up every day and hear the birds singing. It’s the first thing I hear, and I didn’t ever notice that before I was told, ‘You have H.I.V.’ ”

To hear more from Ms. Grinsted and the other voices of patients with AIDS and H.I.V. click here for Patient Voices, and then please join the discussion below.


October 17, 2008, 2:58 pm

Patients Tell Their Stories

One of my favorite online features is called “Patient Voices,” which features real stories from patients coping with everything from attention deficit disorder to pancreatic cancer.

No matter what the topic, “Patient Voices” always generates a lot of discussion on the blog. For the Best of Well podcast this week, I spoke with Web producer Karen Barrow, who created the “Patient Voices” feature for The Times. I asked her how she finds patients to share their stories, and what she has learned from the many people she has spoken with in the course of creating “Patient Voices.”

“You do an interview and think they have a run-of-the-mill story, but you always find there is something special there,” Ms. Barrow said. “I think the bottom line from a lot of these patients is that when you get a serious diagnosis, you can crawl up into a corner in a ball and fade away or you can stand up and face it head on.”

To listen to the rest of our conversation, click on the podcast link below. And click here to read all of the “Patient Voices” created so far.

Audio Listen to the Podcast (mp3)

October 15, 2008, 9:03 am

The Voices of Eating Disorders

INSERT DESCRIPTIONThe faces of eating disorders. (Barney Taxel for The New York Times, Darren Hauck/New York Times, Jeremy M. Lange for The New York Times, Ruth Fremson/The New York Times, Stuart Isett for The New York Times, Brendan Smialowski for The New York Times)

In a country where many people struggle with eating too much, it can be hard to understand a disorder in which people basically starve themselves. In the latest Patient Voices, my colleague Karen Barrow explores the daily challenges of men and women battling anorexia, bulimia and other eating disorders.

You’ll meet Gillian Craig, a 17-year-old from Shaker Heights, Ohio, who still struggles with anorexia.

“People so don’t understand this disease,” she said. “As much as it seems like a choice, it’s not conscious. This is not something I’ve chosen. This is something I’ve been dealt.”

Her mother, Lauren Craig, also talks about the challenges of mothering an anorexic.

“It has been totally devastating,” she said. “It’s all consuming. Even when things are going well, you’re really concerned. When things are bad, everything revolves around it.’

Click here to listen to the voices of eight men and women struggling with eating disorders, including Kirsten Haglund, 19, who was named Miss America for 2008 and hopes to use her position to raise awareness of the problem.

And to listen to the many other Patient Voices features, click here.


September 18, 2008, 9:47 am

Voices of Pancreatic Cancer

INSERT DESCRIPTIONThe faces of pancreatic cancer. (Monica Almeida/The New York Times, Jonathan Alcorn, Brendan Smialowski, Josh Ritchie and John Nowak for The New York Times)

Earlier this year, Carnegie Mellon professor Randy Pausch spoke to a Congressional committee about funding for pancreatic cancer, the disease that eventually took his life this summer. “We don’t have advocates for this disease,” he said, “because they don’t live long enough.”

Nearly 34,000 people a year learn they have the deadly disease. In today’s Patient Voices feature by my colleague Karen Barrow, six of them share their stories of living with pancreatic cancer. A seventh voice belongs to a sister who lost her brother to the disease.

You’ll meet Sandra Balkman Martin, 50, a retired teacher and eight-year survivor of the disease. And there’s Dr. Ron Davis, immediate past president of the American Medical Association, who recently discovered he has late-stage cancer. And there’s Carolynn Kiel, 66, of Laguna Woods, Calif., who lost her mother and sister to pancreatic cancer and who recently learned that she, too, has the disease.

Listen to their stories and others in the Voices of Pancreatic Cancer.


August 28, 2008, 10:56 am

Voices of Crohn’s Disease

INSERT DESCRIPTIONThe faces of Crohn’s disease. (Ben Garvin, Alex di Suvero, Brendan Smialowski and Jeffrey Sauger for The New York Times)

Crohn’s disease is one of those illnesses that many people have heard of but often don’t understand.

Caneka McNeil of Washington, D.C., 23, laughs about the time she told her boyfriend that she had Crohn’s. He thought it was a foot disease, she says.

Crohn’s is a chronic illness that causes inflammation of the digestive tract. It most commonly affects the lower part of the small intestine and can cause severe pain, diarrhea and other symptoms.

Today, “Patient Voices,’’ created by my colleague Karen Barrow, gives a voice to Crohn’s disease, featuring the stories of seven men and women who talk about living with the disorder.

As Ms. McNeil says, the symptoms of Crohn’s are not the type of thing you want to chat about with your friends. “You don’t want to talk about the fact that you have to go to the bathroom all the time,” she says. “Or you might have to run in the middle of the mall to the restroom.”

But Norm Calfin, 61, of Ann Arbor, Mich., has been living with Crohn’s for three decades. “I think living with Crohn’s teaches a great lesson to you,” he says. “You can’t fool your body. You have to pay attention to it.”

To hear all the voices of Crohn’s disease, click here. And please, share your comments below.


August 6, 2008, 12:49 pm

The Voices of Parkinson’s Disease

INSERT DESCRIPTIONThe faces of Parkinson’s disease. Top: Jacqueline Vera Brown, Scott Klempan, Evelyn Simon, Bottom: David Eger, Alyssa Johnson, Scott Giffney. (Photo credits: Allison Smith, Alex di Suvero, Peter daSilva, Fred Conrad and Steven Kagan.)

For many people, our only experience with Parkinson’s disease is that of watching actor Michael J. Fox struggle publicly with the illness as he has campaigned for more research and funding.

But as my colleague Karen Barrow notes in the latest “Patient Voices” feature, there are many less-famous faces of Parkinson’s. Read more…


July 17, 2008, 8:54 am

The Voices of Bipolar Disorder

bipolar disorderBipolar disorder (Rob Bennett, Nathaniel Brooks, Steven Kagan, Jeffrey Sauger, Brendan Smialowski, Lori Waselchuk for The New York Times)

I have long admired the bravery and selflessness of patients who are willing to tell their personal health stories. Today, “Patient Voices,” created by my colleague Karen Barrow, gives a voice to bipolar disorder, featuring nine courageous people who share their own stories of diagnosis, treatment, struggle and acceptance.

You’ll meet 42-year-old Carter Goodwin of Beacon, N.Y., whose honesty about his disease will move you. “I miss the mania,” said Mr. Goodwin, an artist. “I love the mania. It feels so good to feel like I can do anything and like there is something really special about me. But it’s all chemical. It’s not true.”

And there’s Jacqueline Castine of Bloomfield Hills, Mich., who talks of “coming to the very end of myself” before she was diagnosed at the age of 57 with bipolar disorder. Sadly, Ms. Castine’s son also suffered from mental illness, and killed himself.

“I could not save him,” she said. “I could not fix him. He leaves a beautiful daughter and a very sad mother.”

And there’s Victoria Maxwell, 41, from Vancouver, British Columbia, who talks about the challenges she faced while dating and deciding whether to disclose her illness.

“I really wrestled with when do you tell somebody,” said Ms. Maxwell, who is now married. “Generally speaking I would let them get to know who I am, and if they didn’t like me for me, I couldn’t chalk it up to having bipolar disorder.”

Whether your life has been touched by mental illness or not, you will find the stories shocking, heartbreaking and hopeful. To hear the voices of bipolar disorder, click here.

And please, share your comments below.


June 26, 2008, 12:06 pm

Voices of Prostate Cancer

INSERT DESCRIPTIONMen share their stories of prostate cancer diagnosis and treatment.

For men facing prostate cancer, some of the best information about treatment options and side effects doesn’t come from doctors, but from other men who have faced the disease.

The latest “Patient Voices” feature from my colleague Karen Barrow focuses on men with prostate cancer. Listen to the stories of men diagnosed with prostate cancer and their experiences making decisions about treatment and coping with side effects.

To hear more from men with prostate cancer, you may also want to check out my earlier post called “Sex After Prostate Surgery” and the more than 200 comments from readers.

Click here to listen to “Patient Voices,” and post your comments below.


June 10, 2008, 2:16 pm

Voices of Infertility

INSERT DESCRIPTIONThe faces and voices of infertility.

Serious health problems often take an emotional toll, and that’s particularly true for the problem of infertility. Couples endure time-consuming and expensive treatments with no guarantee they will ever conceive or carry a baby to term.

Few people who haven’t experienced infertility can understand the challenges of living with the uncertainty of infertility or the grief that ensues when families give up the dream of having children. Worse, comments meant to soothe (”You can always adopt”) end up being insensitive.

This week, my colleague Karen Barrow’s regular series called “Patient Voices” focuses on infertility. To listen, click here.


May 22, 2008, 9:55 am

The Voices of Attention Deficit Disorder

INSERT DESCRIPTIONThe voices of people living with A.D.H.D.

When is a diagnosis of attention deficit hyperactivity disorder viewed as good news? How does A.D.H.D. medication affect a child’s ability to create art? How do parents and children view attention deficit and hyperactivity problems differently?

These are some of the insights you’ll gain as you listen to an amazing multimedia project by my colleague Karen Barrow, called Patient Voices. This month she gives a voice to the millions of adults, children and families affected by attention deficit hyperactivity disorder. I was particularly taken by 12-year-old Kendrick Royal of New Orleans, who gives a fascinating glimpse into how taking A.D.H.D. medication affects his schoolwork.

To listen to the A.D.H.D. Patient Voices, click here.

Would you like to be featured in a future Patient Voices project? In coming months, we will be featuring people coping with prostate cancer, eating disorders and multiple sclerosis. If you have one of these conditions or another health concern to which you’d like to lend your voice, send an e-mail to health_feedback@nytimes.com with a brief summary of your personal health story.


April 15, 2008, 12:33 pm

Listening to Stroke Patients

INSERT DESCRIPTIONThe voices of stroke patients.

The road to recovery can be challenging for stroke patients, who often have to relearn basic skills, including how to communicate.

You can hear first-hand accounts of life after stroke in a riveting new multimedia feature created by my colleague Karen Barrow. You’ll meet Giulia Weisman, a 47-year-old recovering stroke patient who can still swim and bike, but can no longer run. You’ll also hear the fascinating story of Harvey Alter, 62, who couldn’t speak for two years, but learned how to talk again, only after discovering he could sing “Happy Birthday.”

Check out these stories and more, here.


Recent Posts

January 16
(48 comments)

Survival Lessons From a Sinking Plane

People who survive plane crashes and other disasters offer important lessons on human behavior and how to survive in an emergency.

January 15
(79 comments)

Why the Kidney Divorce Drama Matters

Is it really possible to put a price tag on compassion in medicine?

January 15
(57 comments)

The Voices of Psoriasis

Seven men, women and children speak about coping with a painful and often isolating skin condition.

January 14
(37 comments)

A Father Struggles With His Daughter’s Cancer

A newspaper columnist seeks stories of hope to help his family cope with his adult daughter’s cancer diagnosis.

January 14
(70 comments)

Using Drugs for Longer Lashes

A new drug promises longer lashes, but you may end up with a new eye color too.

Archive

Special Section
well
Decoding Your Health

A special issue of Science Times looks at the explosion of information about health and medicine and offers some guidelines on how to sort it all out

Special Section
well
Small Steps: A Good Health Guide

Trying to raise a healthy child can feel overwhelming, but it doesn’t have to be.

Special Section
well
A Guided Tour of Your Body

Changes in our health are inevitable as we get older. What do we need to know about staying well as we age?

Healthy Consumer
Vitamin News
vitamins

Studies have failed to show that vitamin use prevents heart disease and cancer.

What's on Your Plate
Obama's Kitchen
alice waters

Alice Waters believes the next White House chef could help change the national food culture.

Body Work
The Toll of Extreme Sports
mountain climbing

Extreme sports like high-altitude mountain climbing can take a health toll on the brain and the body.

About Well

Tara Parker-Pope on HealthHealthy living doesn't happen at the doctor's office. The road to better health is paved with the small decisions we make every day. It's about the choices we make when we buy groceries, drive our cars and hang out with our kids. Join columnist Tara Parker-Pope as she sifts through medical research and expert opinions for practical advice to help readers take control of their health and live well every day. You can reach Ms. Parker-Pope at well@nytimes.com.

Feeds

  • Subscribe to the RSS Feed
  • Subscribe to the Atom Feed