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...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...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...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...reactions10comments
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...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...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...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...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...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...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...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...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...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...reactionscomments
Environmental 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...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...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...reactionscomments
Finding Your Way After Your Child Is Diagnosed With a Rare Disease...I remember being in the doctor's office and hearing my son would most likely never walk. As his mom, even though there...reactionscomments
cerebellar ataxia...Dealing with the many symptoms of ataxia. Has anyone else dealt with this?...reactions1replyCopingSymptomsTreatment
10 Reasons Why Students With a Rare Disease Should Consider a 504 Plan...As a caregiver for my daughter, who lives with challenges from a rare disease, I strive to protect her at home and...reactions4comments
