9 posts tagged “week”

Schizophrenia: Living well and working towards a cure

Posted May 18th, 2015 by

Today marks the start of Schizophrenia Awareness Week, and what better way to begin than with the story of an inspiring woman who is living with schizophrenia and advocating for better treatments.

Dr. Elyn Saks was diagnosed with schizophrenia as a college student. At first she struggled with her diagnosis, and it took a while before she found treatments that worked for her. Ultimately she excelled in her studies and became the Chair Professor of Law at USC’s Gould School of Law. She even won a MacArthur Genius Grant for her work in mental health research and advocacy. Recently, she sat down with Brian Staglin of Brain Waves, a video program sponsored by the International Mental Health Research Organization (IMHRO). Dr. Saks talked about her experience with schizophrenia and her work for the empathic treatment of people with mental illness.

Dr. Saks’ story is just one of many. Schizophrenia affects 2.5 million adults in the United States alone, and thousands more have not been officially diagnosed.1 Schizophrenia can be difficult to recognize, as some of the symptoms, like mood swings, impulsive behavior and hallucinations (seeing or hearing things that aren’t there), are common in other mental health conditions. Schizophrenia may also be mistaken for depression, since some people with schizophrenia have a flat mood and slowed speech, or they withdraw from friends and family.2

Stay tuned for a special “In My Own Words” entry from a PatientsLikeMe member.  And if you’ve been diagnosed with schizophrenia, join more than 700 others in the online community.

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


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


Throwing it back this Thursday for Crohn’s and Colitis awareness week

Posted December 4th, 2014 by

We’re throwing it back this Thursday, but to help raise awareness for something that’s happening right now: National Crohn’s and Colitis Awareness Week (Dec. 1st to 7th). For this #TBT, our very own Maria Lowe shares about her experiences with Crohn’s disease. Maria is part of the PatientsLikeMe Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.

This week, it’s all about raising awareness for everyone living with IBD. You can learn how to help on the Crohn’s and Colitis Foundation of America’s (CCFA) website, and be sure to share your support on social media via the #CCFAawarenessweek hashtag. And if you’ve been recently diagnosed with either Crohn’s or UC, reach out to others like you on PatientsLikeMe.

Share this post on Twitter and help spread the word for Crohn’s disease and ulcerative colitis.


It’s time to recognize mental illness in October

Posted October 6th, 2014 by

Think about this for a second; according to the National Alliance of Mental Illness (NAMI) 1 in 4 people, or 25% of American adults, will be diagnosed with a mental illness this year. On top of that, 20 percent of American children (1 in 5) will also be diagnosed. And so for 7 days, October 5th to 11th, we’ll be spreading the word for Mental Illness Awareness Week (MIAW).

What exactly is a mental illness? According to NAMI, A mental illness is a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning. [They] are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life.”

There are many types of mental illnesses. The list includes conditions like post-traumatic stress disorder, bipolar II, depression, schizophrenia and more. MIAW is about recognizing the effects of every condition and learning what it’s like to live day-to-day with a mental illness.

This week, you can get involved by reading and sharing NAMI’s fact sheet on mental illness and using NAMI’s social media badges and images on Facebook, Twitter and other sites. Don’t forget to use the hashtag #MIAW14 if you are sharing your story online. And if you’re living with a mental illness, reach out to the mental health community on PatientsLikeMe – there, you’ll find others who know exactly what you’re going through.

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


Dispelling the myths of schizophrenia

Posted May 20th, 2014 by


May is all about mental health awareness, and we’re continuing the trend by recognizing Schizophrenia Awareness Week (May 19 – 26). Schizophrenia is a chronic neurological condition that affects people’s sensory perceptions and sense of being, and it’s time to dispel the myths about the condition.

Here are some myths and facts about schizophrenia from Northeast Ohio Medical University:1

Myth: Everyone who has schizophrenia knows that they have an illness.
Fact:  Many people who have schizophrenia wait months, sometimes years, and suffer needlessly before a proper diagnosis is made and treatment begins.

Myth: People with schizophrenia are dangerous.
Fact: Studies indicate that people receiving treatment for schizophrenia are no more dangerous than the rest of the population.

Myth: People with schizophrenia have split or multiple personalities.
Fact: Schizophrenia is not a split personality disorder in any way.

The National Institute of Mental Health (NIMH) states that schizophrenia can cause extreme paranoia, along with mental changes like hearing voices others cannot, feeling very agitated or talking without making sense.2 Schizophrenia affects men and women equally, and although it’s normally diagnosed in adults over the age of 45, it is also seen in children. There is no cure for the condition, but antipsychotic drugs are used to manage the symptoms of schizophrenia, and many PatientsLikeMe community members are donating data on their treatments. Check out the NIMH’s fact page on schizophrenia to learn more.

Over the next week, many organizations across the U.S. will be raising awareness for schizophrenia through different events. Here are a couple examples:

If you’ve been diagnosed, you’re not alone – hundreds of PatientsLikeMe members are living with schizophrenia, and they’re sharing their stories in the forum. Take a moment to connect with others who are experiencing schizophrenia in the same ways as you.

 Share this post on twitter and help spread the word for Schizophrenia Awareness Week.


1 http://www.neomed.edu/academics/bestcenter/helpendstigma/myths-and-facts-about-schizophrenia

2 http://www.nimh.nih.gov/health/topics/schizophrenia/index.shtml


It’s time to recognize National Anxiety and Depression Week

Posted May 5th, 2014 by

We already posted about raising awareness for mental health, and now we’re recognizing National Anxiety and Depression Awareness Week (May 5-10). Since 1994, the week has been organized by Freedom from Fear, a national non-profit focused on raising awareness for depression and anxiety.

If you haven’t heard much about these two conditions, here are some quick facts from the Anxiety and Depression Association of America (ADAA):

 

  • An estimated 40 million American adults live with anxiety.1
  • Only one third of these people receive treatment.1
  • At any time, 3% to 5% of all people are experiencing depression.2
  • The lifetime risk of depression is about 17%.2


Nearly one-half of those diagnosed with depression are also diagnosed with an anxiety.2 According to the ADAA, common anxiety symptoms can range from increased worry and social tension to extreme restlessness or general fatigue, and often, these symptoms can be magnified by depression.

Over 17,000 PatientsLikeMe members report being diagnosed with either generalized anxiety or major depression, including almost 7,000 who are living with both conditions. If you’re experiencing anxiety or depression, you’re not alone – you can share your story in the forum and find support on any topic. The PatientsLikeMe mood community is always ready to answer any question, no matter how complex, and members are always sharing their personal health data to help others just like you.

Finally, we mentioned it already, but Steubenville will soon be sharing about navigating the ups and downs of her bipolar II diagnosis on the blog in honor of Mental Health Month and National Anxiety and Depression Week. Keep your eyes peeled!

 

 Share this post on twitter and help spread the word for National Anxiety and Depression Awareness Week.


1 https://www.adaa.org/understanding-anxiety

2 https://www.adaa.org/understanding-anxiety/depression


“Listen to your body” – PatientsLikeMe team member Maria shares her story for National Crohn’s and Colitis Awareness Week

Posted December 4th, 2013 by

Ok, we’re going to switch things up a little bit. This week (Dec. 1st-7th) is National Crohn’s Disease and Colitis Awareness Week, and besides sharing about ways you can help, we thought we’d get personal and tell Maria Lowe’s story. Maria actually works at PatientsLikeMe as part of our Health Data Integrity and Research Teams, and she’s been living with Crohn’s since she was just a kid in the 90s. Her father, David, was also diagnosed with Crohn’s back in 1980, but as you’ll read, it wasn’t an easy process for either of them.

David just visited all of us in the PatientsLikeMe office this past September, and both he and Maria shared their health journeys with the entire team so we could learn more about Crohn’s first-hand. And most recently, Maria took some time to jot down her experiences to share on the blog and help raise awareness this week. Check it out!

Can you tell the community a little about what you do at PatientsLikeMe?

I am a pharmacist, and at PatientsLikeMe, I am part of both our Health Data Integrity team and our Research team. My main role is to help provide some clinical perspective to the information in our medical database. When users of the site want to add any new information to their profile, if it’s not already in our database I will work with the user to learn more and see if we have a match (possibly with a different name), or I will help add it to the database. I also work on projects such as building new communities and get involved in some of the research work we do to offer up the perspective of a healthcare provider.

When did you experience your first symptoms of Crohn’s disease? What was the diagnosis process like?

I think I experienced my first symptoms when I was in the third grade, so I guess I was about 8 years old. All I remember was getting really intense stomachaches, and I would get them a lot. At that time, when my mom talked to my pediatrician, he just suggested that I might be lactose intolerant, so we went with that. I didn’t feel much more until 7th grade. At this point I started getting really bad stomachaches at the same time almost every day. We suspected it was something I was eating so I tried all kinds of things with changing my diet. I even gave up dairy for a whole year to see if that worked (no fun!), but it didn’t seem to change much. Finally, when I was in the 9th grade (about 14 years old by this point) I got so sick, with serious abdominal pain and fever, that my mom insisted that I be seen by a specialist. She and my father got me an appointment with my father’s gastroenterologist and he started to run some tests to see what was wrong. He didn’t think it was Crohn’s disease at first so he wanted to do some tests to rule out a lot of things first – most dealing with my female reproductive organs. Along the way I had several types of x-rays, an ultrasound, a barium test (that’s when you drink this liquid form of barium and get x-rays taken of your abdomen), and then ultimately a colonoscopy. Everything came out clear until my colonoscopy, which is what ultimately showed I had Crohn’s disease in my small intestine just before it connects to the large intestine.

Your dad also has Crohn’s disease – can you tell us a little about his experience? How has that helped you with your own journey?

My dad has had Crohn’s disease since he was about 19. He didn’t receive a diagnosis until much later in his life. As long as I’ve been alive, I’ve know that he had this condition but I learned that it took him a very long time for his doctors to figure out what was wrong with him. They never knew what to tell him and for a while he just kept getting sicker and sicker. Once they diagnosed him and started him on some real treatment, things got a little better for him. However, growing up I used to see him get sick a lot and I’ve seen him go in and out of the hospital for a number of surgeries. When I was little, this used to scare me because I would worry for him. Once my mom and dad suggested that I might also have Crohn’s, I knew that’s what it was. Getting diagnosed was scary, I was young and had just started high school, so it was a difficult adjustment for both my friends and me. But I knew I had my family to support me – my parents had been through this before and knew how to help make things better. I’m extremely lucky that they both saw the signs and symptoms and knew what it was so early. They were able to advocate for me and ensure I got the help I needed. To this day, knowing that my dad has been through this and can help provide guidance and support always makes things better. I will always call him before I call my doctors if something is wrong just to see if he has ever had the same issue I am having.

Do you have any special wisdom to share with the Crohn’s community?

I don’t know if this counts as wisdom or not, but I guess I have a couple pieces of advice for the Crohn’s community. First would be to just know that you aren’t alone. This disease is tough and it can be really embarrassing to talk about so knowing that you aren’t alone in this can be really helpful. There is still a lot out there that the doctors don’t know about what causes Crohn’s and the related complications. If you have Crohn’s and something doesn’t feel right – just keep speaking up and make sure you get the care you feel you need. It is important not to suffer in silence. Lastly, listen to your body. If it’s telling you that you’ve had enough, then it has. Sometimes that is the hardest part, just knowing when you need to give in and allow your body the time it needs to rest.


National Depression Screening Day and National Bipolar Awareness Day

Posted October 10th, 2013 by

Screen Shot 2013-10-08 at 11.46.51 AM

As part of Mental Illness Awareness Week, today is both National Depression Screening Day and National Bipolar Awareness Day. It’s all part of a larger effort to raise awareness about the mental conditions that affect the lives of millions of people around the world.

So what are the stats on depression?[1]

  • Depression affects as many as ten percent of all people in the United States, an incredible 30 million people
  • One out of four young adults will experience a depressive episode by age 24
  • 10% to 15% of all depressions are triggered by other medical conditions (such as thyroid disease, cancer or neurologic problems) or by medications

Here are the facts about bipolar disorder:[2]

  • More than 10 million Americans are living with this condition, which is characterized by extreme mood swings and intense emotional states
  • More than half of patients are diagnosed between the ages of 15 and 25
  • Bipolar disorder affects men and women equally

But at PatientsLikeMe, we know that patients aren’t just a statistic, and that facts don’t tell the whole story. Your journey is unique, and this is why more than 15,000 PatientsLikeMe members with depression and more than 4,000 with bipolar disorder are sharing their stories with the greater mental health community and talking about what it’s actually like to live with these two conditions. In the past, you told us what depression feels like, and today, we are raising awareness for depression and bipolar disorder and learning to live better. Click here to sign in and share your experience today.


[1] http://www.mentalhealthscreening.org/info-and-facts/depression.aspx

[2] http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Bipolar1/Home_-_What_is_Bipolar_Disorder_.htm


Did you know it’s Mental Illness Awareness Week?

Posted October 4th, 2013 by

NAMI awareness

The U.S. Congress has recognized the week of October 6th as Mental Illness Awareness Week (MIAW), and if you or anyone you know is living with a mental health or neurological condition, it’s time to raise awareness and share your experiences.

Serious mental illnesses cover a lot of different conditions (including depression, schizophrenia and bipolar disorder), and they affect almost five percent of U.S. adults, millions of people.[1] What’s more, the symptoms for each condition described as a mental illness vary greatly. We all have a lot to learn about living with mental illness, and here at PatientsLikeMe, we believe one of the best ways we can live better is through sharing our journeys with one another.

So what else is going on during the week? For starters, MIAW coincides with National Depression Screening Day on October 10th, and you can find out more information about various screenings on the Screening for Mental Health website. The National Alliance on Mental Illness (NAMI) has dozens of other activities planned, and if you are wondering what you can do to help, check out their list of suggestions. You can even share the NAMI’s promotional poster with your friends and family.

The mental health community on PatientsLikeMe loves to chat about everything from general mood updates and photo-blogging to Ryan Gosling, and this week is the perfect time to join the conversation. On PatientsLikeMe, there are over 50,000 members sharing their experiences in the mental health and behavior forums – click here to add your voice to the community today.


[1] http://www.nimh.nih.gov/statistics/pdf/NSDUH-SMI-Adults.pdf