21 posts tagged “national”

Getting ready for psoriasis awareness

Posted July 31st, 2015 by

Image courtesy of the National Psoriasis Foundation

Tomorrow is the official start of Psoriasis Awareness Month. The National Psoriasis Foundation (NPF) wants people with psoriasis to know they are not alone: Over 7.5 million people in the U.S. have been diagnosed with the condition, and more than 4,800 people with psoriasis are sharing what it’s like on PatientsLikeMe.

What does psoriasis look like? It’s a skin condition caused by unknown factors, and most people have red, itchy, scaly patches, especially around their knees, elbows and scalp. Psoriasis IS NOT contagious, yet people living with this skin condition often experience stigma when others notice their symptoms.

The NPF has a calendar full of events to create awareness about treatments, and offer support for the psoriasis community. Visit their website to learn more about what’s going on in your city or town. You can join “Team NPF” to participate in a walk, run, or other fund-raising event near you.

During Psoriasis Awareness Month, check out PatientsLikeMe posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews with MariaDavid and Erica, and learn what doctors Jerry Bagel and Steve Feldman have to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe.

Share this post on Twitter and help spread the word for psoriasis.


Let’s talk about men’s health

Posted June 10th, 2015 by

On average, American men live sicker and die younger than American women. Men die at higher rates than women from the top 10 causes of death, and by the age of 100 women outnumber men eight to one1.

Sometimes men just don’t talk about their health problems. Or they might not go to the doctor or for their health screenings as often as women2. This month is National Men’s Health Month and it’s a time to raise awareness and encourage early detection and treatment of preventable disease among men and boys.

There are several ways to get involved and join in the conversation. If you’re looking for a place to start, here are a few ideas:

Join the Men’s Health Forum discussions
Men make up 29 percent of PatientsLikeMe – and 81 percent of these members are sharing about their conditions, tracking their symptoms and connecting with one another in the men’s health forum. If you’re interested in learning more, visit today.

Wear something blue
The Men’s Health Network (MHN) is encouraging everyone to wear blue and share their pictures with the #showusyourblue hashtag on social media.

Research the facts
Learn about Key Health Indicators, common men’s health conditions and leading causes of death on the MHN’s information center.

Check your resources
Here’s a great list of resources and things to do in June, courtesy of the MHN.

Listen to patient interviews
Several men have shared their experiences on the PatientsLikeMe blog – watch Bryan (IPF) and Ed (Parkinson’s disease) speak about their conditions, and listen to David Jurado’s podcast on life with PTS.

Share this post on Twitter and help spread the word for Men’s Health Month.


1 Life Expectancy data is from CDC/NCHS, Health, United States, 2013
2 http://www.menshealthnetwork.org/library/menshealthfacts.pdf


Migraine: More than just a headache

Posted June 5th, 2015 by

June is National Migraine and Headache Awareness Month, but isn’t a migraine just a bad headache? Nope. People like Cindy McCain (wife of Senator John McCain) and 36 million Americans living with migraines will tell you otherwise. And this month, those 36 million are raising awareness and dispelling the stigma around migraines.

Headaches can have many causes – dehydration, loud noises, and even feelings of stress or anxiety can trigger pain behind our eyes and forehead. So what makes migraines different? They can still be triggered by things like intense light, noise, or certain foods, but migraines are inherited neurological disorders. They can last a long time, sometimes hours.1 Migraines can also be accompanied by auras (a visual or auditory perception that a migraine is about to strike).

The people living with migraines in the US are who inspired Cindy McCain to organize the 36 Million Migraine campaign. Listen to her share her experiences with migraines on The Today Show:

 

 

If you’ve ever experienced a migraine, you’re not alone – over 7,500 people are living with migraines on PatientsLikeMe. Many have shared what triggers their migraines and how they manage the pain – join the community to share your experiences, questions and answers with those who know what you’re going through.

Share this post on Twitter and help spread the word for migraine and headache.


1 http://www.americanmigrainefoundation.org/about-migraine/


What do you know about stress?

Posted April 17th, 2015 by

This April, some people aren’t thinking about stress – the crazy snows of winter are just about gone, flowers are blooming and temperatures are rising. But with these positive changes comes a responsibility to recognize the importance of stress and how it affects people’s health. Federal Occupational Health (FOH) has deemed April National Stress Awareness Month, and together, everyone can help raise awareness for stress, its causes and how it can be managed.

The medical definition of stress is “a feeling of emotional or physical tension. It can come from any event or thought that makes you feel frustrated, angry, or nervous.”1 Stress can be acute (short-term) or chronic (long-term), and it causes a wide range of symptoms, ranging from the physical (chest pain, fatigue, muscle tremors) to the emotional (anxiety, restlessness, depression).2 And while acute stress is a natural feeling to experience, chronic stress has been linked to increased instances of health conditions like heart disease, high blood pressure and diabetes.

Stress is experienced by people of all ages, genders and backgrounds – below is what the PatientsLikeMe community is saying about how stress affects them:

“Stress is beyond anything I have ever faced in my life. My tremors all completely out of control. I feel like it is getting too hard to handle. Could I have moved a stage up because of all the stress?”
-Parkinson’s member

“Stress is definitely a killer for me! It multiplies my [fibromyalgia] symptoms by many times and I am extremely stress sensitive. I was a victim of prolonged stress (I have been under a lot of pressure (stress) for over 20 years) and I am convinced that’s why I developed [fibromyalgia].”
-Fibromyalgia member

“I have been dealing with so much stress and anxiety that I have been sick with severe stomach pain, I can’t eat, don’t want nothing to drink. I am just so worn out.”
-Mental health member

This April, visit FOH’s website to learn more about getting involved in raising stress awareness. And don’t forget to share your experiences with stress on social media via the #stressawareness hashtag.

And if you’re living with stress and looking to connect with others who know what you’re going through, join PatientsLikeMe and add your thoughts to the discussions on stress.

Share this post on Twitter and help spread the word for National Stress Awareness Month.


1 http://www.nlm.nih.gov/medlineplus/ency/article/003211.htm

2 http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-symptoms/art-20050987


New partner, Schwartz Center, calls for nominations: National Compassionate Caregiver of the Year

Posted April 6th, 2015 by

Remember a time when you were in the hospital or doctor’s office, feeling nervous and anxious about a shot, treatment or diagnosis? And remember there was someone who made you feel safe, answered all your questions, or did something small that had a big impact?

It’s like what Ken Schwartz said during his battle with lung cancer, “These acts of kindness – the simple human touch from my caregivers – have made the unbearable bearable.” Those experiences inspired Ken to create an outline for an organization to promote compassionate care so that patients and their caregivers can relate to one other in a way that provides hope to the patient, support to caregivers and sustenance to the healing process. And just days before his death in 1995, he founded the Schwartz Center for Compassionate Healthcare.

For 16 of the last 20 years the Schwartz Center has been honoring extraordinary professional caregivers and teams who embody characteristics of compassionate care, like listening carefully, showing empathy, instilling hope and more. We’re proud to be partnered with them in their continued efforts. And you can be a part of it, too.

The Schwartz Center is calling for nominations for its National Compassionate Caregiver of the Year (NCCY) award, and you have until May 1 to submit your nomination.

Award-winning author Atul Gawande will present the award at the Kenneth B. Schwartz Compassionate Healthcare Dinner in November, which coincides with the Schwartz Center’s 20thanniversary. His work focuses on the difficult choices caregivers, patients and families face every day and the issues that can make it hard to provide high-quality, cost-effective and compassionate healthcare.

Do something special
If you have special healthcare providers in your life, honor them for their excellence by nominating them for National Compassionate Caregiver of the Year. It’s a simple but powerful way to show your appreciation for a job well (and compassionately) done.

“Receiving the Schwartz Center award … affirmed that rewarding feeling at the end of an encounter with a patient, when you see hope and relief in their eyes – it’s priceless,”  said Thea James, MD, last year’s Schwartz Center Compassionate Caregiver Award recipient.

More about the partnership
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the new alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

Working together, we’ll survey our members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, designed to let healthcare organizations measure and reward the compassionate care that doctors, nurses and other caregivers provide to patients and families. Jointly, we’ll create content to teach patients what compassionate care really is and how to ask for it.

Julie Rosen, executive director of the Schwartz Center, commented on the part PatientsLikeMe will play in evaluating compassionate care:

“As in other areas of healthcare, we believe measurement can play an important role in improving patients’ care experiences, and we are thrilled to have a collaborator that can help us ensure that we’re measuring what is most important to patients in language they can understand.”

Share this post on Twitter and nominate your candidate for Caregiver of the Year.


What do you know about getting enough sleep?

Posted March 2nd, 2015 by

That’s what the National Sleep Foundation (NSF) is asking during Sleep Awareness Week to help everyone better understand why sleep matters. And what you know probably depends on your own experiences. Are you living with insomnia or a chronic condition that impacts your sleep? Or do you just have a restless night every once in a while?

Back in 2013, more than 5,000 PatientsLikeMe members participated in a survey about their sleeping habits, and we shared what the community helped to uncover (get it!?) in a series of infographics on the blog. Nearly a third of respondents never (5%) or rarely (25%) got a good night’s sleep, and almost half (44%) frequently woke up during the night. Poor sleep is the norm for people living with life-changing health conditions, and it affects everything from driving to relationships and sex – view the infographics here.

To help launch Sleep Awareness Week, the NSF released their “Sleep in America” poll results today, including the 2015 Sleep and Pain survey, which looked to find if stress and poor health were related to shorter sleep durations and lower quality sleep. The poll found that:

  • Greater stress was associated with less sleep and worse sleep quality
  • Pain was related to greater sleep debt – the gap between how much people say they need and the amount they’re actually getting1

For everyone living with these sleep issues, you can help raise awareness this week on social media through the #SleepWeek hashtag. And if you’d like to share any PatientsLikeMe infographics or results, please use the #areyousleeping hashtag.

If you’ve been struggling with sleep, read what PatientsLikeMe members Lori (living with idiopathic pulmonary fibrosis) and Marcia (living with multiple sclerosis) had to say about their insomnia. And don’t forget to reach out to the community in the Sleep Issues forum on PatientsLikeMe – over 40,000 members are sharing about everything related to their sleep.

Share this post on Twitter and help spread the word for Sleep Awareness Week.


1 http://sleepfoundation.org/sleep-polls-data/2015-sleep-and-pain


Recognizing National Donor Day

Posted February 14th, 2015 by

It’s Valentine’s Day, and besides flowers and candy, there’s a special way you can show somebody love today – by registering as an organ donor to give the most precious Valentine of all: the promise of life.

February 14th is also National Donor Day, and it’s all about recognizing those who have donated in the past and celebrating the lives of people who have thrived after receiving a transplant. To help, the U.S. Department of Health and Human Services has organized an awareness campaign including educational videos, stories of survivors and ways to participate today. If you haven’t already, search your state for an organ and tissue registry and learn how to become a donor. And don’t forget to share on social media using the #NationalDonorDay hashtag.

If you’ve received an organ donation – or are waiting for one – you can reach out to the transplant community at PatientsLikeMe and connect with members who have received heartkidneyliverlung or pancreas transplants, among many other types. You can also check out the extensive PatientVoice report on what life is like after a transplant and read about how PatientsLikeMe member Lori survived her lung condition through a lung transplant.

Share this post on Twitter and help spread the word for National Donor Day.


Raising awareness on Veteran’s Day

Posted November 11th, 2014 by

Right now, there are almost 22 million American veterans living in the United States, and every one of them has a story to tell. So today, we’re honoring their service by raising awareness for life after the military.

Like many others who are living with chronic conditions, the injuries our military men and women sustain are not always visible. Thousands of veterans are affected by post-traumatic stress disorder (PTSD), 30,000 have been diagnosed with a traumatic brain injury (TBI) since 2000 and many others are living with depression. Sometimes their symptoms don’t even manifest until many years after their service.

These eye-opening statistics are why we’ve recently announced a new multi-year collaboration with One Mind to help the millions of people worldwide who are experiencing post-traumatic stress traumatic brain injury, or both. We’ll work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

If you’re looking to learn more about US veterans, head to your nearest book store and grab a copy of “For Love of Country,” Howard Schultz’s and Rajiv Chandrasekaran’s new book (just released on November 4). Check out the video synopsis below:

 

There’s also the Concert for Valor today – it’s a free live event that is being organized on the National Mall in Washington, D.C. for veteran’s awareness. If you can’t make it in person, tune in on iHeartRADIO.

If you’re a veteran living with PTS or TBI, you can find others and connect to people who understand what you’re going through on PatientsLikeMe. There are more than 4,000 of members in the Veterans Forum, and every day, veterans are learning more about their health and the best ways to cope. Share a bond, and live better, together.

Share this post on Twitter and help spread the word for veterans.


What’s your epilepsy story?

Posted November 3rd, 2014 by

That’s what everyone’s asking this November during National Epilepsy Awareness Month.  If you’ve been diagnosed, or know someone living with epilepsy, put on your brightest purple clothes and start raising awareness for this neurological condition.

What are three things you need to know about epilepsy? 1

  • It’s a condition that affects the nervous system and causes seizures
  • A seizure is a disruption of the electrical signals between brain cells (neurons)
  • People are diagnosed with epilepsy after they experience two or more unexplained seizures separated by at least 24 hours

Epilepsy affects about 50 million people around the world, including over 2 million in the United States alone.2 3 Although there is no cure for epilepsy, seizures can be managed and suppressed through medications, non-medication treatments such as vagus nerve stimulation, or surgery.4 5 6

To help raise awareness this month, the Epilepsy Foundation of America (EFA) has organized a series of short online videos that feature people from all over the U.S. sharing their experiences with epilepsy. Watch one of them below and check out the rest on the EFA’s “Story Days” campaign page.

 

Los Angeles

Don’t forget to check out Letitia’s video, too – she’s a PatientsLikeMe member who has been living seizure-free after she learned about an epileptologist through her community. And if you’ve been diagnosed, reach out to the more than 9,000 PatientsLikeMe members living with epilepsy.

Share this post on Twitter and help spread the word for psoriasis.


1 http://www.epilepsy.com/learn/about-epilepsy-basics

2 http://www.who.int/mediacentre/factsheets/fs999/en/

3 http://www.cdc.gov/epilepsy/basics/fast_facts.htm

4 http://www.uptodate.com/contents/overview-of-the-management-of-epilepsy-in-adults?source=search_result&search=epilepsy&selectedTitle=3~150

5 http://www.uptodate.com/contents/evaluation-and-management-of-drug-resistant-epilepsy?source=see_link

6 http://emedicine.medscape.com/article/1184846-treatment#aw2aab6b6b2


Depression Awareness Month- What does it feel like?

Posted October 26th, 2014 by

Here at PatientsLikeMe, there are thousands of people sharing their experiences with more than a dozen mental health conditions, including 15,000 patients who report major depressive disorder and 1,700 patients who report postpartum depression. What do they have to say? This word cloud has some of the most commonly used phrases on our mental health forum.

It gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health. But the best way to increase awareness and knowledge, we believe, is to learn from real patients. To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”

  • “My last depressive state felt like I was in a well with no way to get out. I would be near the top, but oops….down I go. I truly felt that I would not be able to pull myself out of this one. I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”
  • “It feels like living in a glass box. You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it. You are totally alone although surrounded by people.”
  • “It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around.  You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success. At the beginning you feel like there has to be an end or a door of some sort – something to get you out, but as you keep walking, your hopes damper by each step. You try yelling for help, but no one hears you.”
  • “Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning. I can’t run. I can’t walk or crawl. In fact, I have no options. I have no memory of how I came to be there. I know I’m going to die, I don’t know when or exactly how. There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear. My family has no idea where I am and I’m alone… except for the headlights down the road.”

Can you relate to any of these descriptions? If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you.

Share this post on Twitter and help spread the word for depression.


Ovarian cancer – taking early action

Posted September 26th, 2014 by

Do you know why teal is the official color for Ovarian Cancer Awareness Month? It’s an acronym for Take Early Action and Live. This September, we can all do our part to help people understand what it’s like to live with this condition, including spreading awareness and education for early signs and symptoms.

In 2014, the American Cancer Society (ACS) predicts over 20,000 women will be diagnosed, and more than 14,000 others already living with ovarian cancer will die from complications. Here are the straight facts about ovarian cancer from the ACS:

  • 1 in every 73 women will be diagnosed with ovarian cancer at some point in their lives.
  • Ovarian cancer ranks 5th in cancer deaths among women.
  • The lifetime chance of passing away from ovarian cancer is 1 in 100.

If you’re in the area, you can attend one of the National Ovarian Cancer Coalition’s (NOCC) many events this autumn, and you can also share the TEAL poster on social media. And if you’re living with ovarian cancer, you can also connect with other women like you in the PatientsLikeMe community.

Share this post on Twitter and help spread the word for ovarian cancer.


More than skin deep

Posted August 10th, 2014 by

 

August might mean the summer’s almost over, but the effort to raise awareness for psoriasis is going strong. It’s Psoriasis Awareness Month, sponsored by the National Psoriasis Foundation (NPF), and everyone is working to eliminate stigma and dispel the myths surrounding the skin condition.

 

 

Starting with the basics

Q: What is Psoriasis?
A: Psoriasis is a chronic, genetic autoimmune condition that causes red, scaly patches on the skin that itch, crack and bleed.1

Q: Who is living with psoriasis?
A: Over 7 million Americans (equally men and women), and global estimates say 2-3% of the world’s population – as many as 125 million people – has the condition.

Dispelling the myths 

Q: Can I catch it from someone else?
A: It’s NOT contagious! Psoriasis is triggered by a combination of genes inherited from parents and exposure to outside factors such as stress, smoking or infections.2

Q: Is there a cure?
A: There is currently no cure, but individualized treatment options are available that reduce inflammation and skin damage.2

Q: Is all psoriasis the same?
A: Nope, there are many different forms of psoriasis, which you can learn about by visiting the NPF’s description page.

But these questions just start the conversation about psoriasis, and getting involved is a great way to educate others. Unsure where to begin? The NPF has some great activities, including national Walks to Cure Psoriasis and “More Than Skin Deep” informational events. And if you have psoriasis, you can apply for the NPF’s One-on-One program, where people living with the condition mentor those who’ve been newly diagnosed.

Don’t forget to visit the psoriasis community at PatientsLikeMe, too. You’ll see how other members treat their psoriasis, and you’ll be connecting and learning from the people who know what’s its like.

Share this post on twitter and help spread the word for Psoriasis Awareness Month.


1 http://www.biotech-now.org/health/2012/08/august-is-psoriasis-awareness-month-psoriasis-isnt-contagious-but-awareness-is

2 http://www.niams.nih.gov/Health_Info/Psoriasis/psoriasis_ff.asp


Help make migraines visible in June

Posted June 3rd, 2014 by

Migraines aren’t just simple headaches – they are intense, debilitating head pains that can last for a very long time if left untreated. That is just one reason why June is National Migraine Awareness Month. This month, everyone is working to get the word out about what it’s really like to experience a migraine.

Denatured Tension – Lisa LaMotte

 

Over 37 million people in the U.S. have been diagnosed with migraine,1 and these people experience a wide variety of symptoms. About a third of patients can recognize when a migraine is coming by a unique “aura” they experience beforehand, commonly flashing lights, zig-zag lines or a temporary loss of vision. Besides the throbbing, intense head pain, migraines can also be accompanied by nausea, vomiting and sensitivity to light and sound.2  Although there is no complete cure for migraines, treatments exist that try to block the onset of a migraine or manage the symptoms afterwards.

 

 

Morning Heavy – Julia Knowlton

 

The American Headache Society’s Committee for Headache Education (ACHE) has a great series of artwork on their website that shows what living with migraine is like (we have just a few here in the post). You can see the rest of the gallery by clicking here.

 

 

 

Loneliness, Pain, Tears – Denise Auger

 

Be sure to wear purple in support of migraine awareness, and don’t forget to share about your activities on Facebook and Twitter. ACHE also has a PicBadge you can post as part of Migraine Awareness Month.

Finally, if you’ve been experiencing migraines, join the more than 5,000 PatientsLikeMe members who are living with the same condition. You can check out treatment evaluations and ask about anything in the forum – the community is always up for sharing.

 

 

 

Share this post on twitter and help spread the word for National Migraine Awareness Month.

 


1 http://www.headaches.org/content/migraine-and-headache-awareness-month

2 http://www.ninds.nih.gov/disorders/migraine/migraine.htm


Spreading the word for arthritis

Posted May 23rd, 2014 by

Lupus? Check. Fibromyalgia and ME/CFS? Check. ALS, cystic fibrosis, Huntington’s disease, mental health, schizophrenia, anxiety and depression? Check!

There’s been a ton of awareness going on in May, but there’s still one more theme to go – National Arthritis Awareness Month. This month, the Arthritis Foundation (AF) is encouraging us all to spread the word to everyone we know.

According to the American College of Rheumatology (ACR), arthritis is an umbrella term used to describe over 100 medical conditions and diseases, known as rheumatic diseases.1 The CDC estimates that 52.5 million adults in the United States have been diagnosed with some form of arthritis (including rheumatoid arthritis, gout, lupus, or fibromyalgia).2 Common symptoms generally include, but are not limited to:

  • Joint pain
  • Stiffness
  • Inflammation or swelling (most frequently in the hips, knees, hands and wrists)

If you’d like to learn more, the ACR has gathered a wealth of information on all the different kinds of arthritis. And if you’re not sure how to participate in Arthritis Awareness Month, here are a few places to start:

Finally, with over 6,000 members, the rheumatoid arthritis community is the largest group of arthritis members on PatientsLikeMe, but many more are living with osteoarthritis (3,994) psoriatic arthritis (1,278) and other forms of the inflammatory condition. They’re donating their personal health data to help others learn about life with arthritis, and they’re always sharing in the forum about symptoms, treatments, advice and more.


1 https://www.rheumatology.org/about/arthritismonth.asp

2 http://www.cdc.gov/arthritis/data_statistics/arthritis_related_stats.htm