39 posts tagged “month”

Food for thought: August (diet) edition

Posted August 12th, 2015 by

Many mothers have told their children “you are what you eat,” but some PatientsLikeMe members have taken that idea one step further and are using their diets to try and manage the symptoms of their conditions. People have been sharing about everything from gluten-free to vegan diets – check out what some people said in the conversations below:

“I truly believe, after 50+ years of fibromyalgia symptoms ranging from pain and depression to migraines, irritable bowel, and low thyroid, that the biggest help of all is to watch my diet, get in lots of fruits and vegetables, and limit sugar and alcohol. I supplement my fruits and veg intake with a whole food based supplement. This has allowed me to reduce medication to thyroid supplementation and a very occasional sumatriptan.”
-Fibromyalgia member on her “detox” diet

“My diet is greens, beans, nuts and seeds. Favorites are kale, spinach, cucumbers, tomatoes, carrots, celery, cauliflower, broccoli, sweet potatoes, black, pinto and kidney beans, lentils, black-eyed peas, cashews, almonds, peanuts and pistachios, flax and pumpkin seeds. I also have occasional sweet potatoes, apples, oranges and watermelon. Grains are consumed about once a week and are usually Farro or Quinoa.”
-Diabetes II member on his vegan diet

“With all my meds and other things I take for depression and the DBS, I can’t say that a gluten-free diet has been particularly whiz-bang helpful. However, I think it may have slowed my symptoms or made me feel better than I should.”

“I am also trying to stay as gluten-free and sugar-free as possible. It is a daunting exercise each day, but may be worth it long-term. I believe that diet plays a huge role in all disease states. All we can do each day, realistically, is take one day at a time and note any positive changes in our PD symptoms to gauge how we are benefitting.”
-Parkinson’s members on their gluten-free diets

If you missed our other Food for Thought posts, read the previous editions here.

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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.

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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.

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


Arthritis Awareness 101

Posted May 27th, 2015 by

You may have heard that arthritis affects the joints, but did you know that it’s an umbrella term used to describe over 100 medical conditions and diseases (known as rheumatic diseases)?1 Conditions that fall underneath forms of “arthritis” include rheumatoid arthritisgoutlupus, and fibromyalgia. And the symptoms can vary depending on the type of arthritis and the person living with the condition.

May is dedicated to raising awareness for arthritis (along with schizophrenia, lupus, CINDs, ALS…) – the people in the following video shared with the United States Congress what it’s like to live with arthritis:

May is drawing to a close, but it’s not too late to share your story on social media through the #ArthritisAwarenessMonth and #ArthritisMonth hashtags. And if you or someone you know has been diagnosed with any form of arthritis, the Arthritis Foundation has put together a collection of resources for everything from pain management to treatment options.

Don’t forget to visit the various arthritis communities on PatientsLikeMe – 7,488 people are sharing about living with rheumatoid arthritis, 4,795 with osteoarthritis and 1,527 with psoriatic arthritis.

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


Coming together for immunological and neurological health in May

Posted May 12th, 2015 by

If you follow PatientsLikeMe on social media, you might have seen a few “Pop Quiz Tuesday” posts. Today, here’s a special pop quiz – what do fibromyalgia, myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) have in common?

The answer is that they are classified as Chronic Immunological and Neurological Diseases (CINDs). And since 1992, every May 12th has been recognized as International Awareness Day for CINDs. Today, in conjunction with Fibromyalgia Awareness Month, it’s time to recognize everyone living with a CIND.

While fibromyalgia and ME/CFS are both CINDs, each is a little different. Check out some quick facts about each condition:

Fibromyalgia1

  • Affects 5 million Americans over the age of 18, and the majority are women
  • The cause of fibromyalgia is unknown
  • Common symptoms include insomnia, headaches, pain and tingling in the hands and feet

ME/CFS2

  • Affects between 836,000 to 2.5 million Americans
  • The large majority of people living with ME/CFS have not been diagnosed
  • There are five main symptoms of ME/CFS, as opposed to the more general symptoms of fibromyalgia:
    • Profound fatigue that impairs carrying out normal daily activities
    • Unrefreshing sleep
    • Cognitive impairment
    • Symptoms that worsen when a person stands up
    • Symptoms that worsen after exerting any type (emotional, physical) effort

But sometimes, living with a CIND can be hard to describe. Check out this short video to get an idea of the invisible symptoms of ME/CFS.

Today, you can share your support for fibromyalgia and ME/CFS on social media through the #May12th, #Fibromyalgia and #MECFS hashtags. If you have a chance, you should incorporate the color blue into your activities, anything from changing the background on your Facebook to shining a blue light on your house at nighttime.

And if you’ve been diagnosed with a CIND, join the community at PatientsLikeMe. The fibromyalgia community is one of the largest on the site – over 59,000 people are sharing their experiences, along with more than 11,000 living with ME/CFS.

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


1 http://www.niams.nih.gov/health_info/fibromyalgia/fibromyalgia_ff.asp

2 https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf


What can you do to challenge ALS in May?

Posted May 4th, 2015 by

It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped,  a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In the 2000s, familial ALS was linked to 10 percent of cases, and new genes and mutations continue to be discovered every year.1 In 2006, the first-of-its-kind PatientsLikeMe ALS community, was launched, and now numbers over 7,400 strong. And just two short years later, those community members helped prove that lithium carbonate, a drug thought to affect ALS progression, was actually ineffective.

This May, it’s time to spread awareness for the history of ALS and share everything we’ve learned to encourage new research that can lead to better treatments.

In the United States, 5,600 people are diagnosed with ALS each year,2 which means that well over 100,000 have started their ALS journey since 1992. And in 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was also diagnosed. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004. If you don’t know their family’s story, watch Jamie’s TED Talk on the big idea his brother inspired.

So how can you get involved in ALS awareness this May? Here’s what some organizations are doing:

If you’ve been diagnosed with ALS and are looking to connect with a welcoming group of others like you, join the PatientsLikeMe community. More than 7,000 members are sharing about their experiences and helping one another navigate their health journeys.

Don’t forget to keep an eye out for more ALS awareness posts on the blog in May.

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


1 http://www.alsa.org/research/about-als-research/genetics-of-als.html

2 http://www.alsa.org/about-als/facts-you-should-know.html


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


Recognizing the signs of IBS

Posted April 10th, 2015 by

Did you know that between 25 and 45 million people in the United States have IBS, but that many do not seek medical care for their symptoms?1 Are you one of them? Improved knowledge about IBS could lead to better treatments and care, and that’s why the International Foundation for Functional Gastrointestinal Disorders (IFFGD) has designated April as IBS Awareness Month. Watch the IFFGD’s public service announcement about IBS below:

There are many ways to get involved in spreading awareness for IBS:

Over 4,300 PatientsLikeMe members are living with IBS – share your story with the community and help others live better, together.

 

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


1 http://www.aboutibs.org/site/what-is-ibs/facts/


You can make a difference in April

Posted April 3rd, 2015 by

Eight years ago this April, the PatientsLikeMe Parkinson’s disease (PD) community launched, and now, more than 12,500 people are sharing about what it’s like to live with PD. What better way to recognize this awesome community than to participate in Parkinson’s Disease Awareness Month?

Listen to Leslie Chambers, the president and CEO of the American Parkinson’s Disease Association (APDA), explain the facts about PD in the video below:

As she says, 60,000 people worldwide will be diagnosed with PD in 2015 – that averages out to 164 people every day, or one person every nine minutes.

This April, it’s not just about the 12,5,000+ PatientsLikeMe members living with PD, or the 60,000 people who will be diagnosed in 2015 – it’s about everyone who is living and has ever lived with PD, and all their family, friends and colleagues who have been affected.

You can make a difference. The APDA is running a “30 days, 30 ways” campaign all month long, so be sure to check their website daily to learn how to get involved. The Parkinson’s Disease Foundation is also participating in raising awareness, and they’ve created a great toolkit to get you started. And don’t forget to share through the #PDawareness or #Parkinsons hashtags.

If you’ve been diagnosed with PD, join 12,500 others in sharing to live better, together.

Share this post on Twitter and help spread the word for Parkinson’s disease.


MARCHing together for myeloma awareness

Posted March 20th, 2015 by

There’s a lot of awareness going on in March. So far, we’ve learned more about sleep conditions (how pain can increase sleep debt), multiple sclerosis (the myths and facts) and brain injury (how it might be more common than you think). Today, we’re shining a spotlight on myeloma, a type of blood cancer that affects more than 750,000 people worldwide.1

You can add to your knowledge during Myeloma Awareness Month (MAM), and educate your friends and family about the condition. Awareness is contagious.

Here are the basics about myeloma:

  • Myeloma is the second most common blood cancer in the world
  • It begins in plasma cells (white blood cells that are part of the immune system) and eventually collects in bone marrow
  • When myeloma collects in more than one location in the body, it is called “multiple myeloma”
  • Common symptoms include bone pain, anemia and extreme fatigue

It’s estimated that over 24,000 new cases of myeloma were diagnosed in 2014.2 For these people and everyone living with myeloma, here’s how you can get involved in raising awareness:

As the IMF says, let’s MARCH together for myeloma awareness this month. If you’ve been diagnosed, read about PatientsLikeMe member AbeSapien’s journey with multiple myeloma in his interview. And don’t hesitate to reach out to the more than 1,600 PatientsLikeMe members living with multiple myeloma.

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


1 http://mam.myeloma.org/educate/

2 http://seer.cancer.gov/statfacts/html/mulmy.html


Myths vs. facts about multiple sclerosis

Posted March 18th, 2015 by

Stop! What do you know about multiple sclerosis (MS)?

That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that will hopefully dispel some of the myths surrounding the neurological condition.

There are 13 shareable infographics in total – click here to view the gallery.  Don’t forget to use the #MSawareness hashtag when you post on your Facebook or Twitter. Let’s kick things into high gear and start dispelling myths about MS this month so that everyone is armed with better information all year round.

What’s the community saying?

“The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness”
-MS forum thread

“I have only been offended two times in 20 years by strangers. Family, now that’s a different story – stigma runs rampant there when it comes to MS.”
-MS forum thread

“A society that attaches a stigma to our disease when people fear it or don’t believe it exists, then discriminates against us instead of trying to imagine what our lives are like.”
-MS forum thread

Already a member? Awesome! Click on any of the links above and join the conversation. Not a member? No problem. Sign up for free here and then add your thoughts. Every voice is welcome.

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


You are not alone in brain injury

Posted March 16th, 2015 by

#NotAloneinBrainInjury. That’s the overarching theme of the 2015 Brain Injury Awareness Month, organized by the Brian Injury Association of America (BIAA). 2.5 million Americans survive a traumatic brain injury (TBI) each year, and and it’s time to raise awareness for the 5.3 million people currently living with a brain injury.1

In addition, Wednesday, March 18 is “Brain Injury Awareness Day.” There are many different ways to get involved – you can share one of six promotional posters created by the BIAA, listen to several public service announcements and even get involved with the TBI Portrait Project.

Finally, don’t forget to share your support for TBI awareness on social media through the #NotAloneinBrainInjury hashtag. Just click on the Twitter icon below or spread the word on your Facebook page.

Our co-founder, Jamie Heywood, said it best when discussing PatientsLikeMe’s recent partnership with One Mind, a non-profit organization dedicated to benefiting all affected by brain illness and injury:

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions. Our partnership with One Mind and the individuals dealing with PTS and TBI will provide insights about effective treatments from people in the real world, and drive new understanding about gaps in care. It will also provide a new resource where people are empowered to help themselves as they learn how to live better with their condition.”

If you’ve been recently diagnosed with a TBI, join the more than 1,500 PatientsLikeMe members living with different traumatic brain injuries. The community is ready to answer any and every question you might have.

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


1 http://www.biausa.org/brain-injury-awareness-month.htm


March is Multiple Sclerosis Awareness Month

Posted March 9th, 2015 by

Multiple sclerosis (MS) affects more than 2.5 million people worldwide, and in the United States alone, about 200 new people are diagnosed each week. Those are just a couple of the many reasons why the Multiple Sclerosis Association of America (MSAA) recognizes March as Multiple Sclerosis Awareness Month.

What more do we know about MS? Doctors are unsure of the root cause of the condition, but women are twice as likely as men to develop MS. Additionally, the farther away from the equator you live, the greater likelihood you’ll experience MS – overall, your lifetime chance of developing MS is about 1 in 1,000.1

Did you know that there are four different types of MS? Each one affects people a little differently.

  • Relapsing-remitting MS (RRMS) affects the large majority (85 percent) of MS patients, and this type features clearly defined periods when symptoms get worse and activity decreases.
  • Primary-progressive MS (PPMS) causes a clear progression of symptoms and equally affects men and women.
  • Secondary-progressive (SPMS) is a form of PPMS which is initially diagnosed in only about 10 percent of patients.
  • Progressive-relapsing MS (PRMS) is found in only 5 percent of MS patients, but these people have both clear relapses and a clear progression of symptoms.

So now that you know more about MS, what can you do to help raise awareness? Here are just a few of the ways the MSAA recommends:

  • Read one of the MSAA’s publications, including the recently published annual MS Research Update, which includes the latest developments in MS treatments and research.
  • Find and attend one of the MSAA’s educational events for people with MS and their care partners.
  • Register for Swim for MS, which encourages volunteers to create their own swim challenge while recruiting online donations.
  • Check out the Australian MS Society’s Seeing [MS] campaign, which features MS patients and photographers working together to visualize the invisible symptoms of MS.
  • Share on social media using the #MSawareness hashtag and MSAA profile badge.

If you’ve been recently diagnosed with MS, check out our MS patient interviews and blog posts, or join more than 38,000 people with MS at PatientsLikeMe.

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


1 http://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic