side effects

Selfcare

It’s Self-Care Day! 7 “pillars” for taking care of you

Conditions, Patient Experiences / By

Today is International Self-Care Day. There’s even a Senate resolution designating July 24 as a day to recognize the importance of self-care in the U.S. (it’s on 7/24 because, ideally, it should be a focus 24/7 for everyone). Has your self-care — from diet and hydration to hygiene and hobbies — been slipping because of competing priorities? Bring it back into focus with these “seven pillars” recommended by health care experts – plus some easy TLC ideas from your fellow member, Laura. What are the “7 pillars”? The International Self-Care Foundation has developed what it considers The Seven Pillars of Self-Care: Pillar 1 – Knowledge and health literacy: Finding health information and ways to understand it so you can make appropriate health decisions Pillar 2 – Mental well-being, self-awareness and agency: Getting health care screenings; “knowing your numbers” for important stats like body mass index (BMI), cholesterol and blood pressure; and keeping tabs on your mental health Pillar 3 – Physical activity: Staying as fit as possible (talk with your doctor about a healthy exercise plan that works with your condition) Pillar 4 – Health eating: Keeping a nutritious, balanced diet Pillar 5 – Risk avoidance or mitigation: Quitting tobacco, limiting alcohol use, getting vaccinated, practicing safe sex and …

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“Seesawing Libidos”: A podcast for Parkinson’s Awareness Month

Parkinson's Disease, Patient Experiences / By

April is Parkinson’s Awareness Month, and this year we’re getting personal. “Seesawing libidos,” an episode of WBUR Boston’s Modern Love podcast, explores an unexpected side effect of a Parkinson’s medication: an overactive sex drive. The story comes from comedian Marc Jaffe, whose wife Karen was diagnosed with Parkinson’s 15 years into their marriage. Before Karen’s diagnosis, Marc was the one with the stronger libido, but their roles would reverse after she started her medication. Compulsive behavior was a side effect, and in Karen’s case, it manifested as hypersexuality. Marc shares, “Those pills would change our lives more than Parkinson’s.” Eventually, Karen was able to channel her obsessive behavior into fundraising and advocating for Parkinson’s. Check out the podcast to hear more of Marc’s reflections on how a medication could affect his marriage in such an intimate way. Have you ever experienced a side effect that changed your personal life? How did you cope? Jump in the forum and share your story.   Share this post on Twitter and help spread the word.

Your data doing good: IPF treatment experiences

Conditions, Idiopathic Pulmonary Fibrosis / By

Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients really need. During #24DaysofGiving, we’re highlighting some of the most important things we’ve learned from data that members like you have selflessly shared, and all the good your data donations are doing. Every year, the Food and Drug Administration (FDA) approves new medications that can help people living with life-changing conditions. But with new treatments come new questions. And that’s exactly what happened at the end of 2014 for people living with idiopathic pulmonary fibrosis (IPF). IPF is a rare condition that causes scarring in deep lung tissue over time and has no cause or cure, and before October 2014 no available treatment. That’s when two FDA-approved medications for the condition became available, simultaneously. They had the potential to make a difference in the lives of IPF patients, but how could they learn which medication might be right for them? If they started taking one …

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Depression Awareness Month- What does it feel like?

1 Comment / Depression, Patient Experiences / 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 …

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Working Together for an AIDS-Free Generation

HIV/AIDS, Patient Experiences / By

Saturday, December 1st, is World AIDS Day (hashtag #WAD2012), a time for re-upping your vigilance and awareness levels about HIV/AIDS.  The global AIDS crisis is not over until an AIDS-free society is achieved, and unfortunately, we’re not there yet.  That’s why the US theme for World AIDS Day 2012 is “Working Together for an AIDS-Free Generation.” More than 30 years after the first reports of AIDS in the United States, approximately 50,000 Americans are still contracting HIV – the virus that can lead to AIDS – each year.  In addition, nearly 1 in 5 individuals living with HIV is unaware of his or her infection.  That’s why we can’t become complacent about HIV prevention and treatment. Join PatientsLikeMe partner AIDS.gov in “Facing AIDS.”  What can you do to help?  Start by reminding everyone you know that they can locate a local HIV testing site by texting their zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator.  You can also set an example in your peer group by going and getting tested yourself. Living with HIV?  Connect with the 3,000+ members of PatientsLikeMe’s HIV Community for information, support and advice.  If you know your HIV type …

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Strengthen Your Knowledge During National Osteoporosis Month

1 Comment / Conditions, Patient Experiences / By

Of the estimated 10 million Americans with osteoporosis – which means “porous bones” – 80% of them are women.  That’s why we wanted to shine a spotlight on this condition during National Women’s Health Week.  Approximately one in two women over the age of 50 will break a bone because of osteoporosis.  Even more alarming is the fact that 24% of hip fracture patients age 50 and older die in the year following their fracture. Now that you know the facts, it’s time to talk to your family about what you can do to prevent this scenario.  The National Osteoporosis Foundation’s Generations of Strength Campaign encourages women (and men!) to start conversations about bone health and family history during National Osteoporosis Month.  Have either of your parents experienced a broken hip, spine or wrist, for example?  What about height loss or a spine that curves forward (two possible signs of broken bones in the spine)?  Research shows that genetics plays a major role in osteoporosis.  If either of your parents has a history of osteoporosis or broken bones, you are more likely to break a bone. Fortunately, there are preventive steps you can take.  Thirty years ago, osteoporosis was generally …

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Preparing for Life After an Organ Transplant

2 Comments / Organ Transplants, Patient Experiences / By

Last week, we shared our interview with a liver transplant recipient who is living out her dreams post-transplant.  Today we’d like to add the insights of 32 organ transplant recipients who took part in an online discussion hosted by PatientsLikeMe.  Split equally in gender with ages ranging from 25 to 60 years old, our discussion group reported 43 organ transplants amongst them, more than half of which were kidney transplants.  Liver, lung, heart and pancreas transplants were also represented. What did these 32 patients have to say about life after transplantation?  What do they wish they’d known earlier?  From anti-rejection medication side effects to ongoing expenses, we’ve collated some of the key themes from this eye-opening discussion in a new report entitled The Patient Voice: Preparing for Life After an Organ Transplant. If someone you love is awaiting a life-saving transplant – or you’re a transplant candidate yourself – don’t miss this collection of real-world tips, experiences and checklists.  Also, please share this free report with anyone who might find it useful. Do you know someone living with a mental health condition such as bipolar II disorder, alcohol addiction or major depressive disorder?  Check out our previous report about getting …

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What Do You Know About Thyroid Disease?

5 Comments / Patient Experiences / By

Let’s start with the basics:  do you even know where your thyroid is? A small, butterfly-shaped gland located at the base of the neck (just below the Adam’s apple), the thyroid influences the function of the heart, brain, liver, kidneys and skin.  That’s why it’s so important to know if you have a thyroid problem – especially if you’re a woman.  Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.  Hypothyroidism can cause weight gain, miscarriages, forgetfulness, irregular menstrual periods and numerous other symptoms. January is Thyroid Awareness Month, which means it’s a good time to “check your neck.”  As many as 30 million Americans may have thyroid problems, but more than half of them remain undiagnosed.  To help combat this lack of awareness, two thyroid disease patient advocates – Mary Shomon and Katie Schwartz – have created a new campaign called “I Am the Face of Thyroid Disease.”  It features video messages and photos from around the world to “shine a spotlight on the diversity of thyroid patients and their practitioners, and help overcome the stigma and silence surrounding …

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Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published

1 Comment / Epilepsy / By

Last April, we had the honor of presenting the results of our epilepsy survey at the American Academy of Neurology (AAN) Annual Meeting.   In some of the key takeaways, we shared that 55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for charting seizures, and 30% felt they received better healthcare as a result. In addition, 27% each said that PatientsLikeMe was useful for managing side effects and for improving treatment adherence.  (Check out our press release for more on this survey, which we conducted with our partner UCB.  PatientsLikeMe and UCB launched the epilepsy community in 2010.) Now, we’re pleased to announce that our full survey results have been published as an open access article in the scientific journal Epilepsy & Behavior.  This gives you and anyone interested in epilepsy the opportunity to dig deeper into our findings.  For example, another interesting discovery is that one in three epilepsy patients surveyed did not know a single other person with their condition.  That is – until they joined PatientsLikeMe.  Survey respondents reported the benefits of using an online community to find other patients like them, and strikingly, …

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Life with Parkinson’s Disease: What We’ve Learned

2 Comments / Parkinson's Disease, Research / By

On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD).  Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members. Taking a look at the makeup of our PD community, 52% are male, and 48% are female.  More than 98% identify PD as their primary condition, and just shy of 20% report experiencing their first symptom between the ages of 50 and 59.  Others report experiencing their first symptom anywhere from adolescence to their seventies.  (See the chart for a complete breakdown.)  What exactly are the symptoms of this condition?  Some of the most commonly reported include stiffness/spasticity, slowness, sexual dysfunction, memory problems, excessive daytime drowsiness and constipation. As Steve’s interview revealed, Carbidopa-Levodopa (Sinemet) is one of the most commonly prescribed treatments for PD as it helps to control tremors, one of the most visible manifestations of the disease, and other movement dysfunctions.  Currently, more than 1,698 members report taking this medication, and 300+ of them have submitted Sinemet treatment evaluations, which review the drug’s effectiveness, side effects, dosage, cost and more.   Here’s what one …

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