Awareness

National Donor Day: Changing lives on both sides

“Be Mine.” It’s the mantra of Valentine’s Day, but today we’re honoring those who’ve said, “Have mine.” February 14 is also National Donor Day, and it’s all about recognizing the most precious valentine of all: the gift of life. For every organ, tissue, marrow, platelet and blood donation, there are two sides to the story. Check out how two PatientsLikeMe members describe what it’s like to be offered another chance at a life, and how it feels to give that opportunity…   Life after a lung transplant “I have a new normal now, but that is ok because I CAN BREATHE! It is something most people take for granted until they can’t. I know I did. The first year after transplant is rough to get the meds right … the frequent bronchoscopies. I had a setback with CMV virus and have had GI problems (med side effects) but have gotten it straightened out. In three weeks is my one-year birthday and I am positive I would not be here now if I didn’t get my new left lung.” –       PatientsLikeMe member The memory of her father lives on “When my dad passed away, nine people were given a new lease …

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We can. I can. Start talking about cancer.

Every February 4, all corners of the world unite in the fight against cancer on World Cancer Day (WCD). What’s the purpose? To get as many people around the globe talking about a disease that continues to claim 8.2 million lives every year.[1] How can you get involved? Every action counts and the more people out there making noise – the better. Enough awareness and education urges people to take action and can save lives. This year marks the start of a three-year campaign for reach and impact under the tagline, “We can. I can.” You can start talking by sharing one of the ready-made tweets on their site, add your WCD activity on the map of impact, support WCD’s “Talking Hands” on social media, join the WCDThunderclap campaign, download sharable materials and more. And don’t forget to share your awareness efforts and experience with cancer in the PatientsLikeMe forum. #WeCanICan, together. Share this post on Twitter and help spread the word. [1] http://www.worldcancerday.org/about

Rheumatoid Awareness Day: 7 things you might not know about RA

Today is Rheumatoid Awareness Day, and we’re spreading the word about the condition that affects over 9,000 PatientsLikeMe members. Rheumatoid disease can manifest in many different ways – fatigue, joint pain, stiffness and fever, to name a few — so it can be hard to understand the full scope of this condition. To show the world what living with #TheRealRD is like, the Rheumatoid Patient Foundation has shared these seven interesting facts: 1.Rheumatoid disease is not a type of arthritis; arthritis is just one symptom. Rheumatoid disease (RD) is a systemic disease related to immune function that can affect any part of the body including the heart, lungs, eyes, skin or joints.                             2. Available treatments are not adequate for many people with moderate to severe rheumatoid disease. About 1/3 of patients don’t respond to available biological disease modifying drugs.  3. Rheumatoid disease is different in each person — and even in the same person over time. Some people experience constant pain, and some have a series of “flares” and periods of lower disease activity. Symptoms can vary greatly from day to day 4. RA research is …

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“I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month

January is Thyroid Awareness Month. So, how much do you know about the small, butterfly-shaped gland that influences the way your heart, brain, liver, kidneys and skin function? To help spread #thyroidawareness, we asked member Barbara to tell us about living with thyroid cancer and hypothyroidism, a condition that affects over 6,000 PatientsLikeMe members. Barbara shares how her thyroid issues have taken an emotional toll on her, as well as some advice on being your own advocate: “Fight for your right to feel normal again.” Tell us a little about yourself. What are your hobbies and passions? I really love photography and a new passion is gemstones. I have been taking photos since I was a kid.  I love landscapes and different and interesting people. I still have several film cameras but I love the freedom of digital. I enjoy video and web design as well. I have gotten the opportunity to study gemstones and it has opened up a big new world. I am currently studying how to identify gemstones. It is like being a detective.  There are so many different types. Learning their origins has been fascinating. I also love watching Kung Fu movies with my husband. When you were diagnosed, what went through your mind? My diagnosis was a little odd. …

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Crohn’s & Colitis Awareness Week: Are you #IBDAware?

Image courtesy of the Crohn’s & Colitis Foundation of America This week (12/1 through 12/7) is Crohn’s & Colitis Awareness Week. The Crohn’s & Colitis Foundation of America (CCFA) wants to know what awareness means to you, asking, “Are you #IBDAware?” Crohns disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD), affect 1.6 million Americans.[1] Though both are types of inflammatory bowel disease (IBD), Crohn’s disease and ulcerative colitis are not one and the same. Symptoms are similar, but the areas affected in the gastrointestinal tract differ.[2] To learn more about the two conditions, the CCFA website has several resources to help make you #IBDAware. During Crohn’s & Colitis Awareness Week, there are a number of ways you can help the CCFA and the patient community raise awareness for both conditions: Join the CCFA Thunderclap on social media, tomorrow at 12pm ET. Using the hashtag “#IBDAware,” share what awareness means to you on Instagram, Facebook or Twitter Tomorrow, join CCFA’s National Call-In Day and urge your legislator to join the Congressional Crohn’s & Colitis Caucus For the CCFA and the IBD community, raising awareness for Crohn’s disease and ulcerative colitis is a year-round effort. Learn how you can get …

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World Diabetes Day: Act today to change tomorrow

Diabetes affects almost 400 million adults[1] around the world and contributes to nearly 5 million annual deaths[2]. November is American Diabetes Month, but on November 14, the entire world joins together to unite their voices against this disease on World Diabetes Day (WDD). It was started back in 1991 by the International Diabetes Federation (IDF). And today, WWD is the world’s largest diabetes awareness campaign reaching a global audience of over 1 billion people in more than 160 countries. The campaign draws attention to relevant issues within the diabetes community and this year’s theme is “act today to change tomorrow,” with a focus on healthy eating habits and the importance of access to healthy, affordable food in reducing the global burden of the disease. There are many ways to get involved – and stay involved year round – listed on the WDD site. How are you showing your support for those touched by diabetes this November, or in the months ahead? Share your awareness efforts and experience with diabetes in the PatientsLikeMe forum and connect with the almost 2,500 PatientsLikeMe members living with type 1 diabetes and nearly 18,000 members living with type 2 diabetes.  Share this post on Twitter and help spread …

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Epilepsy Awareness Month: The value in helping others

It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy. Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains: “I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic tools such as the 72 hour EGG, treatments, triggers and the like. The most beneficial data that I found on this site was learning about epileptologists and more about epilepsy surgery. Prior to finding out about such a specialists, I continued to use the ineffective treatments given to me by general neurologists for 21 years. After doing some more research on the epileptology, I fired my neurologist and went to see the epileptologist in my area, who was able to perform special testing to accurately diagnose and recommend epilepsy surgery for my condition. As a result, I underwent pretesting last year for epilepsy surgery and after successfully passing all pre-test, I had my surgery (Left Temporal Lobectomy) on August 16, 2012 and have been seizure free ever since! My surgery was very successful and the chances of me having seizures again is very unlikely. I’ve …

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Shining a light on lung cancer

What began as one awareness day back in November of 1995 has grown into Lung Cancer Awareness Month, now in its 20th year, as the lung cancer movement expanded and activities increased. Lung cancer is the second most common cancer in both men and women, but is the leading cause of cancer death in the United States.[1] Although the risk of developing lung cancer is highest in smokers (about 90%[2]), many people who do not smoke develop lung cancer each year. Luckily, there are plenty of ways for you to get involved and help spread lung cancer awareness throughout the month of November – and year-round. Shine a Light on Lung Cancer: This year’s 7th annual global event, hosted by Lung Cancer Alliance, is taking place on November 5, and is largest coordinated awareness event for lung cancer in the U.S. The lighting of the flashlights in local communities honors survivors and loved ones, and provides hope, inspiration and support for everyone touched by lung cancer. Find the Shine a Light on Lung Cancer event near you! Do your part in fundraising for a cure: Participate in the event of your choice, on your own or with family and friends, …

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World Psoriasis Day 2015: Have hope, take action, make a change

Back in 2004, a group of patient associations from around the world launched World Psoriasis Day. Conceived by patients, for patients, World Psoriasis Day is an international event that aims to give a voice to the more than 125 million people worldwide living with psoriasis and psoriatic arthritis. On October 29, the International Federation of Psoriasis Associations (IFPA), its members associations and support groups perform activities internationally to raise awareness of psoriasis and psoriatic arthritis. Each year, World Psoriasis Day has a theme, and this year’s focus is “Hope. Action. Change.” So how can you get involved and help World Psoriasis Day reach its goals of raising awareness, improving access to treatment, increasing understanding and building unity among the psoriasis community? Join the World Psoriasis Day 2015 campaign: tell others what gives you hope for a better future for people living with psoriasis and psoriatic arthritis on the Wall of Hope. Be a part of the World Psoriasis Day Facebook group: share your story with others. Take part in the conversation: use the hashtags #ihopepso, #iactpso and #ichangepso to share your vision for a better future for people with psoriasis, and what you are doing to help bring about change. Year-round, you …

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Raise your hand for Eczema Awareness Month

This month on the blog, we’ve already talked about Breast Cancer Awareness Month, Mental Illness Awareness Week and World Mental Health Day. Today, we’re keeping the awareness going strong by highlighting Eczema Awareness Month. Eczema (Atopic Dermatitis) may affect more than 30 million people in the U.S. So what is eczema, exactly? It’s an itchy, red rash affecting babies, children and adults, and can appear all over the body. Symptoms often become less severe as children grow older, but sometimes, eczema can actually start in adulthood. There’s no cure for the condition, but in many cases it’s manageable. As part of this year’s effort, the National Eczema Association launched the #ExposingEczema movement, which aims to start breaking through stereotypes and creating a new public awareness about how eczema really affects people’s lives. Here’s what you can do to be a part of #ExposingEczema: Raise your hand Post a picture of you raising your hand on Facebook, Twitter or Instagram with #ExposingEczema Encourage your friends and family to raise their hands Share your eczema story on Facebook, Twitter or Instagram with #ExposingEczema Remember, eczema isn’t contagious, but awareness is. There are several other ways that you can get involved during – …

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