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
Living for the Good Things...Living with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control...reactionscomments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your Child...If you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them...reactionscomments
Does anyone have olgilvie syndrome?...Does anyone have olgilvie syndrome and what did Dr say prognosis was? This is very rare from what we were told....reactions2replies
The Power of Your Voice: Sharing All Symptoms with All Specialists...Time and time again, I'm reminded about the importance of telling every single one of my doctors about my health updates –...reactions2comments
Groin Older: Aging With Hemophilia...As a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a...reactions4comments
Parenting and Rare Disease: A Journey Through Grief and Acceptance...The day my amazing little boy was born, I knew he was different. I was 22 years old and forced to grow...reactionscomments
Reflecting on the People We Would Never Meet Otherwise...It's a beautiful thing to meet someone who makes you forget your troubles. - author unknown I have always strived to see...reactionscomments
Personal Grooming With a Rare Disease...Living with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list...reactionscomments
