Awareness

Going global for World MS Day

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It’s World MS Day and this year we checked in with the global MS community to see how members around the world are living with MS. Here’s what they had to say:     “MS is very rare in India. I’m from North India, known as Kashmir, a very beautiful place and it’s rightly known as paradise on earth. For me living with MS is like dying every second in my crippled life. Imbalanced walk in MS really sucks. Shaking of arms or very poor pen grip in my hands makes me feel pity on myself. I don’t think that staying positive works. I had to leave my engineering studies and a government job because of it. Unfortunately, I can’t let others feel what I or my body feels for myself. I can’t afford the life-long treatment for an incurable disease like MS as I’m an idle cripple.”   “I am 50 years old and live alone with severely advanced SPMS. While my MS has progressed very quickly, since I have accepted I need care 22 months ago, the government has been EXTREMELY slow to catch on how desperately in need of care I am. I have [had] to fund most …

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How does ALS make you feel #InThreeWords?

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May is ALS awareness month and this year, we’re joining the ALS Therapy Development Institute to share how ALS makes us feel, #InThreeWords. Sad, determined, frustrating as hell – just a few of the words PatientsLikeMe staff chose. Want to get involved? Check out what PatientsLikeMe staff had to say, including a video from our co-founder, Jamie Heywood.       And, check out 2016-2017 Team of Advisor member Cris’ three words: What are ALS members saying in the forum?    “Enraged, alone, afraid” – Kzueger  “Uninvolved, sorrowful, useless” – mbond0623 “Frustrated, compassionate, claustrophobic.” – jimig “Frustrated that I can’t stop this disease, overwhelmed at times by the losses created by ALS and grateful for kindness of others” – bountiful “Helpless, angry, pissed off.” – MsJLB   Let’s spread the word and end ALS together.   Share this post on Twitter and help spread the word.

March is Brain Injury Awareness Month. Let’s learn more, together.

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Brain injuries can happen to anyone, anywhere at any time. The important thing to know is that you’re not alone, which is the primary theme of Brain Injury Awareness Month organized by the Brain Injury Association of America (BIAA). At least 2.5 million children and adults sustain traumatic brain injuries (TBI) in the U.S. each year – on PatientsLikeMe alone there are 7000+ living with a traumatic brain injury. Take a look at the diverse community living with TBI on PatientsLikeMe:   PatientsLikeMe members have spoken up about living with TBI, how they manage it and their initial thoughts after being diagnosed. Here’s what one member, Vicki, had to say about life after her diagnosis with TBI. Want to get involved? There are a few different ways you can show your support during Brain Injury Awareness Month – you can share one of BIAA’s six promotional posters, better educate yourself and others about brain injuries with this fact sheet, or join the conversation on BIAA’s Facebook page. If you’ve been diagnosed with a brain injury, join the more than 7,000 members on PatientsLikeMe who are living with traumatic brain injuries. Ask questions, track your experience and find a place in …

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Going the distance for MS awareness

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Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to cross Austria off her list. See what she has to say about overcoming the physical limitations of her condition. You’ve run 54 marathons and 41 of those have been after your MS diagnosis. How has running changed for you since your diagnosis? Running has given me so much. When I was first diagnosed and depressed, running was my therapy to cope with the overwhelming sadness. However, I started tripping and falling while running. I thought I was tired from overtraining. I soon learned that I was falling because I have a common symptom of MS called drop foot. My running became laborious and depressing. My neurologist told me to lower my expectations and that ignited a fire in me to not give up. I found an orthotist and he fitted me with an ankle-foot orthotic (AFO). It’s made of carbon fiber, so it’s light and …

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World Cancer Day – Voices from the community

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Over the last year, we’ve shared many stories from the cancer community on the PatientsLikeMe blog. This year, in honor of World Cancer Day, we’d like to highlight some of those stories:   Member Iris (Imartinez), shared her story for Ovarian Cancer Awareness Month. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Revisit her story.         Member Clare (Riverdale) shared her story – a diagnosis of non small-cell lung cancer while her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before. Learn about her journey.       Member David, a member of the 2015-2016 PatientsLikeMe Team of Advisors, opened up about living with Stage IV lung cancer and how he hopes to be an inspiration to other cancer patients. David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the …

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Thyroid Awareness Month

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January is Thyroid Awareness Month. Why do we need awareness? An estimated 15 million Americans have undiagnosed thyroid problems. 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. Who has HYPOthyroidism on PatientsLikeMe? 6,920 patients have this condition 30 new patients joined this month 1,271 say hypothyroidism is their primary condition Who has HYPERthyroidism on PatientsLikeMe? 518 patients have this condition 3 new patients joined this month 166 say hyperthyroidism is their primary condition A simple self-exam to “check your neck” could help with early detection or help you find lumps or enlargements in the neck that may point to a thyroid condition. Think you might have a thyroid problem? Here’s how to perform a neck check at home – all you need is a handheld mirror and a glass of water: What’s one thing you’d like others to know about living with a thyroid condition? Comment here or head to the forum to join the conversation.   Share this post on Twitter and help spread the word.

Cancer Awareness in September: prostate, thyroid and ovarian

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September is all about education — and not just because it’s back to school month. It’s also the official awareness month for three different types of cancer: prostate, thyroid and ovarian. Here’s a snapshot of what national organizations have done to spread more understanding…   Prostate cancer: #StepUp, get checked The Prostate Cancer Foundation (PCF) has launched a #StepUp campaign to empower men to take control of their health and encourage their families to support them. It’s also about early detection — have you or men in your life been screened for prostate cancer? Get checked, and learn more in these helpful guides including questions to discuss with your doctor.   Thyroid cancer: Get a neck check With tips, awareness tools, graphics and more, the Thyroid Cancer Survivor’s Association offers enough information for people to stay involved throughout the year.   Ovarian cancer: See the signs, #KnowOvarian Do you know the common signs of ovarian cancer? It can be difficult to detect, so the National Ovarian Cancer Coalition has been using the hashtag #KnowOvarian this month to gain more attention for this condition that affects 1 in 75 women. Check out the website to learn more about the risks, symptoms and what …

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The community speaks out for Pulmonary Fibrosis Awareness Month

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How much do you know about pulmonary fibrosis? Today kicks off Global PF Awareness Month, and to spread more understanding for this condition which affects over 6,600 PatientsLikeMe members, we asked the community to speak up. In a recent forum thread, members chimed in with the one thing they think people should know about what it’s like to live with PF. Here’s a snapshot of what they had to say:   “…how hard it is to deal with the fact that you can’t do things you used to do and that even things we typically take for granted like showering are very difficult as the condition worsens.” — PatientsLikeMe member living with PF   “Don’t settle, we have options, find a doctor that specializes in interstitial lung diseases which pulmonary fibrosis is part of. Let them decide with your help as a patient what is best for YOU. We are always so quick to put a pill in our mouths and hope it works. With this disease that isn’t necessarily the answer. Live with IPF/PF and advocate for your health.” — PatientsLikeMe member living with PF   “I have lived with pulmonary fibrosis since i was diagnosed 10 years ago but …

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“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month

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In honor of Sjögren’s Awareness Month, we connected with PatientsLikeMe member Dana, a New Jersey-based poet and screenplay writer who was recently diagnosed. This isn’t the first time we’ve interviewed Dana — she was a member of our 2014 Team of Advisors! Here, Dana talks about the daily challenges of living with Sjögren’s, an autoimmune disease often associated with rheumatoid arthritis that affects nearly 2,000 other PatientsLikeMe members. She also shares how she manages Sjögren’s along with her other conditions (bipolar II, depression and thyroid issues), and offers some advice to patients in her situation: “Take it moment by moment.” Tell us about your diagnosis experience. It started with pneumonia. After a batch of antibiotics, I was OK. Then I got a glandular infection. More antibiotics. Two months later and it was back again, it looked like I had the mumps, but it was my glands behind my ears again. My primary doctor suspected something and ran a complete blood work on me. Testing for RA and lupus and everything else. I came back negative for RA, but positive for something called Sjögren’s syndrome and nothing else. Most doctors only know that you get dry eyes and dry mouth from Sjögren’s syndrome. …

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“We are the ones that know what is required to give us the care we deserve” — Member Ann shares her story for Rare Disease Day

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 February 29 only comes around every four years – and this year, it’s extra special: Today marks the 9th annual Rare Disease Day. In the United States, a disease is considered rare if it affects less than 200,000 people at any given time.1  This year’s theme is all about elevating the patient voice, so we caught up with member Ann (annpkerrigan) to learn more about what it’s like to live with alkaptonuria (AKU), a rare disease that affects 159 PatientsLikeMe members. Here’s what she had to say… How would you describe AKU to someone who has never heard of it? I suffer from AKU, which is a rare genetic disease with no cure or treatment but not fatal. This is what I was told six years ago when diagnosed after many years attempting to identify my condition. AKU is a metabolic disease, which causes severe early-onset osteoarthritis. It can be a painful and degenerative disease. Over the years, I’ve learned to adapt and make changes to my home. I live alone and it’s crucial I can manage everything. Prior to diagnosis my knees were very painful so I moved to a ground floor apartment in Bristol to be closer to work and because using stairs became impossible. My GP referred an …

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