Colleen Hannon

Genomics & Medicine: Your Questions Answered!

Patient Experiences / By

Recently, PatientsLikeMe’s Associate Director of Community Management, Brad Hornback, sat down with Dr. Eric Topol (Founder & Director at Scripps Research Translational Institute) and Christine Von Raesefeld (Patient Advocate) to discuss the topic of genomics and medicine, including how genomic data can affect the healthcare journey and how individuals may receive their own DNA results by participating in the All of Us Research Program.  The webinar resulted in some great questions from our PatientsLikeMe community and social media followers, which we’ve compiled and had our team respond to, below.  In case you missed the webinar, you can watch it here! Q+A Question: What are genetics and genomics? Answer: Genetics is a term that refers to the study of genes and their roles in inheritance – in other words, the way that certain traits or conditions are passed down from one generation to another. Genomics is a more recent term that describes the study of all of a person’s genes (the genome), including interactions of those genes with each other and with the person’s environment. Genomics includes the scientific study of complex diseases such as heart disease, asthma, diabetes, and cancer because these diseases are typically caused more by a combination …

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Member Story: Living with Major Depressive Disorder

Patient Experiences / By

Meet TrixieSwizzle, PatientsLikeMe member since 2017. TrixieSwizzle has been managing her Major Depressive Disorder for as long as she can remember. She has also been living with HIV since 2002. She believes strongly in the power of sharing your story as a form of therapy and is an open book about her condition. “I have been trying to implement a ‘zen’ philosophy in my life. No drama, no toxic people or things, etc. – some days it works and some days… well… I tell myself I will try again!” Watch TrixieSwizzle share her story:     Major depressive disorder is one of the most common mental disorders in the United States, with an estimated 17.3 million adults age 18 or older having at least one major depressive episode in 2017. About 1 in 6 adults will have depression at some point in their life, but anyone at any age can get depressed. If you are looking for more information about living with MDD check out some of our additional blogs: Am I Depressed? Surprising Signs of Depression 10 Ways to Get Through Tough Times Warning Signs for Suicide How to Treat Major Depressive Disorder 8 Celebrities Who Struggle with Depression …

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Health Information: What Sources Do People Trust?

Patient Experiences, Research / By

Finding accurate and reliable health information has become more confusing for patients than ever before. By examining where patients are getting their information — for example, from trained healthcare professionals or their peers — and their ability to determine the most reliable sources can help the industry and patients better understand the importance of providing reliable health information and the value of patient-to-patient discussions. We recently surveyed 1,000 U.S. consumers about challenges and perceptions around finding accurate and reliable health information. Here’s what we discovered: Being Your Own Advocate, with the Help of Trusted Sources When asked what type of health information they looked for most often, consumers stated that symptoms (31%) and treatment options (21%) are what they look for most. 43% of respondents say that they use their doctor as a resource to evaluate new treatment options, while only 2% say they rely on peer groups. What does this mean? The state of the healthcare industry overall is influx, which means it can be easy for patients to get lost in the shuffle, as many health systems are understaffed and strapped for resources. Now more than ever, patients need to become their own advocates and ensure that they …

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Dave’s Journey with Spinocerebellar Ataxia Type 8 (SCA8): Getting Back on the “Bike of Life”

Patient Experiences, Voice of the Member / By

Meet Dave (@SlowDave) Dave, a retired attorney, and avid mountain biker was riding in the car with his wife when he felt very dizzy, asked her to pull over, and collapsed on the side of the road in 2005. This incident sparked many subsequent trips to the emergency room and meetings with neurologists and other specialists to get to the bottom of Dave’s health concerns, which included cognitive decline and issues with mobility and balance. Initially, doctors were very perplexed and thought he had caught an infectious disease from recent international travel or even had early multiple sclerosis (MS) symptoms. A visit to a hospital in New Mexico and many genetic tests later concluded the diagnosis of Spinocerebellar ataxia type 8 (SCA8), a neurodegenerative condition characterized by slow-progressing problems with movement, balance, and coordination. SCA8 is a rare disease that was only discovered in 2000. The fact that it had only been identified for about five years at the point of Dave’s incident meant that he had a long road of learning ahead. He often found his doctors understanding the science behind his condition, but not having the experience to truly understand what was going on. With a condition as …

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two woman holding each other

How to Ask for Help

Patient Experiences / By

Everyone needs it, but sometimes the hardest thing to do is to ask for help. Opening yourself up to feeling vulnerable, especially when you are already feeling compromised by your condition, can be challenging. It is important to remember; you do not have to shoulder it alone. Your chronic health condition may force your hand in making some adjustments to your everyday life, not only for you but those around you. Depending on where you are on your health journey, you may need to think about asking your loved ones for a bit more support. It can be hard to admit that your condition is taking away yet another piece of who you used to be, but reaching out for help is necessary for managing your stress and comfort levels. You don’t have to feel ashamed for needing a helping hand (or two!) The National Alliance on Mental Illness reminds us that there is no right or wrong way to ask for help, but if you are looking for some motivation for starting these kinds of conversations, try these tips our members have recommended: Be clear and specific about where you need help or support When you ask for help, …

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Chronic Kidney Disease Woman and Cat

Lessons Learned on a Seventeen Year Journey to Diagnosis

Chronic Kidney Disease, Multiple Sclerosis, Patient Experiences / By

Meet Trisha (@DXMS06) Before Trisha Bordelon, a 69-year-old PatientsLikeMe (PLM) user from Springfield, Missouri, officially received any diagnosis, she was guilty of what many of us in her shoes would do – spend hours going down a rabbit hole of internet searches to try and figure out what was going on with her health. She had it in the back of her mind that her symptoms were aligning with Multiple Sclerosis (MS). However, even after seeing multiple doctors, her diagnosis was still unclear, and Trisha became more and more frustrated. One of the first symptoms she remembers was constantly losing her balance and bumping into the walls in her home. While her doctor was blaming this on the steroids she was taking, the symptoms continued even once she stopped taking the medication. It really never occurred to Trisha that something was really wrong with her until she experienced optic neuritis – twice. She was finally referred to a neurologist for scans. Still, she was frustrated she had no answers and was trying to figure out what was going on with her body. From what started with her first symptom in 1989, she experienced a double vision attack when driving to …

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woman with psoriasis

The Surprising Benefits of Summer for Your Psoriasis

Patient Experiences, Psoriasis / By

7.5 million Americans and 125 million people worldwide are living with psoriasis. Some factors can make the summer months challenging for people with psoriasis, including dry air conditioning, increased sweating, and feeling self-conscious about exposing your skin. However, it is not all bad news – the summer also provides a few surprising ways to improve your skin. Psoriasis is a systemic condition resulting from a malfunction of the immune system, specifically over-active T-cells, a type of white blood cell involved in inflammatory activities. These cells trigger immune responses that cause increased blood flow and inflammation, resulting in skin growth and build-up. Psoriasis can affect any part of your body but is most common in areas like your elbows, knees, scalp, and torso. There are several types of psoriasis, but during a flare-up, a typical reaction looks like a scaly red rash or, inflamed patch of silvery skin called plaques. The rash is not only unsightly but can be painful, itchy, and uncomfortable. If you think you might have psoriasis check out the CDC’s fact sheet with information about diagnosis and treatment. We want you to get the most out of your summer, regardless of your condition. Here are some ways you …

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people on a rollercoaster

4 Theme Park Tips for Physically Disabled People

Patient Experiences / By

Roller coasters, water slides, tilt-whirls, and Ferris wheels are all exciting ways to spend your summer afternoon, but when you use a wheelchair, these options might not be accessible to you. This does not mean that you should cancel your next trip to a theme park. In fact, The American Disabilities Act has set an accessibility standard that applies to amusement parks and their rides. Know Before You Go In addition to visiting the park’s website to look for their disability guide, it is also helpful to reach out to the customer service team over the phone. When you speak with them, they can give you a plan to access their park and get the most out of their attractions. You can also ask about discounted prices, complimentary admission for assistants, and fast-track policies for disabled visitors. Mapping Out Your Trip – In More Ways Than One! In most cases visiting a large theme park requires a degree of travel. While top travel priorities for able-bodied people may include brainstorming what outfits to pack or what camera to buy, those living with a chronic illness or using a wheelchair may have some additional challenges in planning a trip. We recently …

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Summer picnic

BYO-BBQ: Navigating a Cookout with Dietary Restrictions

Patient Experiences / By

If you have a chronic condition, enjoying summertime social events like backyard BBQs can be challenging. The burgers, pasta salads, and custom cocktails are often tempting, but they can trigger your symptoms and lead to health flair-ups. Good news – your dietary restrictions do not have to end all your fun. With just a little prep, you can easily enjoy yourself and the foods that make you feel your best. Here are some tips for navigating mealtime at your next festive affair! Plan Ahead and Bring Something Safe When you are invited, ask the host what is on the menu and what you can bring. This way, you can make a game plan about which foods you’ll indulge in. It also gives you the opportunity to bring something you know is safe for you and your condition. If you are looking for some recipe inspiration, PatientsLikeMe members recently shared their favorite snacks and meals that fit within their dietary restrictions. Read through some tried-and-true recipe ideas for eating with Type 2 Diabetes, Multiple Sclerosis, Fibromyalgia, and more! Stay Hydrated and Look for Extra Electrolytes When Necessary It is easy to be so focused on your dietary restrictions you forget about …

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woman holding up hand

From Lupus Diagnosis to Fearless Patient Advocate

Lupus, Patient Experiences / By

Meet Alyshia Alyshia Merchant was always healthy, but as a busy mom, she did experience fatigue from time to time. However, it wasn’t until she was out to dinner in 2012 when the early signs of her condition became more apparent. Her friends pointed out a rash that had spread across her cheeks and nose. This innocuous comment would soon lead her to a life-altering discovery that she had Lupus nephritis, an autoimmune disease that threatened her health and quality of life. After multiple conversations with doctors who told her to get more sleep and take more vitamins, it took a fainting episode at work that landed her in the emergency room for her condition to be taken seriously. After a few tests, bloodwork, and a biopsy, her nephrologist officially diagnosed Alyshia with Lupus. Alyshia is not alone in having trouble getting an accurate diagnosis. Lupus can be challenging to identify because it impacts many different parts of the body and presents in a variety of ways. The Lupus Foundation of America has compiled a list of common symptoms and recommends you advocate for how you feel when you speak with your doctor. They also offer a helpful symptom questionnaire …

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