what are some tips for managing rar disease?...Early Diagnosis: First and foremost, it's crucial to get a proper diagnosis as early as possible. Due to the rarity of the disease, it might take longer than usual. Consulting...reactionsrepliesDiagnosis
Questions I Ask Myself on My Healing Journey...I started my medical trauma healing quest in the early 2000s, but since 2022, I have made a consistent effort. I have learned a lot along the way. I am...reactionscomments
What Is the Impact of Rare Disease Awareness Days?...January marks the awareness day for one of my rare diseases, Moebius syndrome. Awareness is sometimes a funny concept when it comes to rare diseases: there are over 7,000 identified...reactionscomments
3 Things I Learned About Doctors After My Son's Rare Diagnosis...If you or a family member are a rare disease patient, chances are it took quite some time to receive an accurate diagnosis. Once you received your diagnosis, perhaps your...reactionscomments
When You’re a 'Poster Child' for Your Rare Disease...I will never forget the day I saw what the more common characteristics of someone diagnosed with MAC lung disease were because it ALL described me at the time I...reactionscomments
Art As Rare Disease Advocacy ...I have only been living with narcolepsy since my college years. When I discovered what kind of rare disease I had, at first, I was genuinely confused. I didn't know...reactions7comments
28 Years...It's been 28 years since I've been going to doctors for help. 28 years since I got congestive heart failure at 32. Kidney stones, kidney failure. Tumors wrapped around my...reactions8comments
A Rare CHANCE Life...My story is about my son Chancely, who is a very strong & vibrant young boy! I started noticing he was sick extremely often at about 6 months old. Then...reactions3comments
Self-Care Is The Best Care...Simply put self-care means taking time to do things that will protect your well-being and happiness. It’s those things that will pour into you when you feel depleted, boost your...reactions1comment
The Impact a Rare Cancer Has Had On My Life...Being diagnosed with cancer 16 years ago changed my life forever. Nothing can prepare your mind, or body to be told you have cancer. A rare one at that with...reactions2comments
My Wild Ride...I was diagnosed with myathenias gravis in September of 2022. I presented with shortness of breath while doing water aerobics. Sounds crazy but I am an excellent swimmer. To feel...reactions4comments
Shifting the Focus of Goal Setting...Goal setting is a topic covered A LOT, and it's pretty straightforward, right? Set a goal, break it down, and work on the steps to achieve that goal. Whenever I...reactionscomments
Attack Ataxia: Shundra's Journey...I have three family members that have passed from complications of this hereditary condition. My two oldest sisters and a nephew. Spinocerebellar ataxia is a condition that runs heavily in...reactions2comments
You're Just Complicated...Have you ever been told that you are complicated by a medical professional? I have time and time again. My journey started off with migraines back in the 90s. Then...reactions2comments
When Stubbornness Pays Off...I knew from childhood that there was something different in my health from other kids. It seems as if I was born just before various issues were diagnosed and studied...reactions2comments
Embracing Mindfulness: 31 Affirmations for Rare Disease Caregivers...Reflecting on the past year, I realize that last year was a test of self-discovery, leading me down a path I never thought I would tread. It was the year...reactionscomments
Advocacy Anywhere: Communication With Your Doctor...Through my many healthcare experiences due to having cystic fibrosis, I have experienced the power that lies in self-advocating for my health in the clinic setting. My passion is to empower...reactionscomments
Active 7 days agoEnvironmental Allergies Or No...I'm dealing with something very weird. This is the 3rd time in the last 5 years or so. I have seen an Allergist, a ENT doctor, did many tests and...reactions2replies
New Year’s Resolutions and Rare Diseases...I'm not a fan of New Year's resolutions. I'm sure many of us have seen or done this before – we make big goals that are not necessarily attainable, and...reactionscomments
Getting Back Into Advocacy After Burnout...Reaching complete physical, mental, and emotional exhaustion is a serious threat that can occur in a variety of life situations – not just in the career field. Living with chronic...reactionscomments
