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
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 was an obvious difference between my son and...reactionscomments
Active 7 days agocerebellar 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 school. As we prepare for her first high...reactionscomments
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 over your own health. I live with narcolepsy...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 busy. Modifying everyday activities based on your child's...reactionscomments
Active todayDoes 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 – including bothersome symptoms – even when it is...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 more "normal" life possible, or at least one...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 up quicker than most. Motherly instincts, formed over...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 the good in every situation. I will admit...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 of things it impacts in my life is...reactionscomments
Caring for Someone With a Rare Disease...Caregiving for a loved one with a rare disease is both rewarding and challenging. Much time, energy, and resources can go into caregiving for rare diseases. A loved one may...
Keeping Your Family Connected When Raising a Child With a Rare Disease...Raising a child with a rare disease extends beyond medical hurdles – it encompasses emotional and familial challenges. The impact ripples through our entire family, influencing relationships and our day-to-day...reactionscomments
FeaturedDietary Changes...Hi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in...reactions11repliesDiet & NutritionCopingNewly Diagnosed
How Do I Find a Specialist for My Rare Disease?...When you are diagnosed with a rare disease, you will likely have many questions and concerns. Finding a specialist who can guide you on your journey is key. The specialist...reactionscomments
Why Caregivers Feel Isolated...Being a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is different, I think many of us would agree...reactionscomments
Participating in a Focus Group as a Rare Disease Patient...Recently, the Cystic Fibrosis (CF) Foundation invited me to participate in a focus group with other late-diagnosed CFers. It was a fascinating experience that led me to want to share...reactionscomments
Holidays with a Rare Disease...The holidays can be exciting but also come with many challenges for those with rare diseases. What special considerations do you have to take into account during this time of...reactions1replyCopingFriends & Family
My Rare Disease Holiday Survival Guide...Living with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get the holidays off from our rare diseases! Living...reactions3comments
