Christmastime Can Present More Challenges Than Cheer for Chronic Lyme Disease Patients

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By Jill A. Ross This blog post shares the perspectives of members of the North Central West Virginia Lyme Community (NCWVLC), a support group for Chronic Lyme Disease patients, about how living with a serious chronic illness has affected their ability to participate in the holidays and how overextending themselves during this busy season can … Read more>>

Hyperhidrosis: More Than Just Sweating

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This blog post features Molly Nair, a young woman living with hyperhidrosis. November is Hyperhidrosis Awareness Month and Ms. Nair shares how this condition has affected her life since she was in elementary school. She details what it is like to live with hyperhidrosis, the obstacles she has faced because of it, and how she … Read more>>

Jen’s Story: An Announcement – From MBC to Sarcoidosis and Beyond

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In honor of Breast Cancer Awareness Month, we bring you Jen’s story… Jen is a seven-year breast cancer survivor, though she still struggles with that term. At 32, she was mistakenly diagnosed with metastatic breast cancer. She was treated for metastatic breast cancer for four-and-a-half years before her doctors concluded that she was in remission … Read more>>

Trials and Tribulations: Navigating the Clinical Trial Space

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After being diagnosed with ovarian cancer in 2014, Karen J. Ribler, a retired association director from Washington, D.C., became an active volunteer within the ovarian cancer community. She helps educate student doctors and nurses through the Ovarian Cancer Research Fund Alliance’s Survivors Teaching Students program, and serves on the Board of Directors for Ovarian and Gynecologic Cancer Coalition/Rhonda’s … Read more>>

Alan’s Story: I have a Rare Disease and I am Crossing Borders – #RareDiseaseDay2018

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Our guest post on this Rare Disease Day 2018 comes from Alan who lives in Whales and is fighting ataxia head on. Alan is raising awareness of this disease through his blog and on social media. Connect with Alan to learn more: www.ataxiaandme.org Facebook @ataxiaandme Twitter @ataxiaandme Instagram @ataxia_and_me Alan’s Story I have a Rare … Read more>>

Susanne’s Caregiver Story: Why Do I Always Cry In Hospitals?

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November is National Caregiver Month and today’s post comes from Susanne White, founder of Caregiver Warrior. She was blessed with the opportunity to care for her parents and ventured out on a journey that would change her life. She blogs about this journey on her website and shares her experience, strength and hope with others so that … Read more>>

Tech to Help You Take Care of A Senior Loved One from Anywhere

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Today’s post comes to us from Marie Villeza who developed ElderImpact.org to provide seniors and their caregivers with resources and advice. Tech to Help You Take Care of A Senior Loved One from Anywhere In the past, long-distance caretaking was at best difficult and ineffective and at worst completely impossible. These days, modern tech is making it … Read more>>

Rennie’s Story: Looking So Good, Feeling So Bad – Living with MS

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Our guest blog post today comes from Rennie R., an MS patient advocate, public speaker, and retired high school teacher, who has been living with multiple sclerosis since June 2003. She shares what it’s like to live with the invisible symptoms of MS, when you “look so good” but actually feel so bad. Visit Rennie’s … Read more>>

Caregiver Becomes Patient: Danielle’s Story

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Danielle, a Stanford Medicine X ePatient Delegate and fierce advocate for her daughter’s rare health condition, shares her own personal story about what it’s like when the caregiver becomes the patient. You can find Danielle on social media: Twitter: @Danielle_Edges Blog: http://lifeishardwearahelmetadventuresinlife.blogspot.com Facebook page devoted to her daughter: https://www.facebook.com/AlexandrasJourney/ — Caregiver Becomes Patient On July 5, … Read more>>

Anne’s Story: Adapting to Life With MS

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Learning to adapt is key to managing any chronic illness. Our guest blogger, Anne P., shares the hurdles of life with multiple sclerosis in today’s post. – Anne’s Story I have multiple sclerosis and many “MSers”, myself included, get really frustrated by the fact that our disease is often invisible. Especially in the early stages of … Read more>>