Questions I Ask Myself on My Healing JourneyI 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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
3 Things I Learned About Doctors After My Son's Rare DiagnosisIf 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...Reactions0reactionsComments0 comments
When You’re a 'Poster Child' for Your Rare DiseaseI 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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments7 comments
Shifting the Focus of Goal SettingGoal 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...Reactions0reactionsComments0 comments
Embracing Mindfulness: 31 Affirmations for Rare Disease CaregiversReflecting 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...Reactions0reactionsComments0 comments
Advocacy Anywhere: Communication With Your DoctorThrough 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...Reactions0reactionsComments0 comments
New Year’s Resolutions and Rare DiseasesI'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...Reactions0reactionsComments0 comments
Getting Back Into Advocacy After BurnoutReaching 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...Reactions0reactionsComments0 comments
Finding Your Way After Your Child Is Diagnosed With a Rare DiseaseI 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...Reactions0reactionsComments0 comments
10 Reasons Why Students With a Rare Disease Should Consider a 504 PlanAs 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...Reactions0reactionsComments0 comments
Living for the Good ThingsLiving 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...Reactions0reactionsComments0 comments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your ChildIf 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...Reactions0reactionsComments0 comments
Which Specialist Needs to Know Your Symptoms? All of Them.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...Reactions0reactionsComments0 comments
Groin Older: Aging With HemophiliaAs 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...Reactions0reactionsComments4 comments
Parenting and Rare Disease: A Journey Through Grief and AcceptanceThe 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...Reactions0reactionsComments0 comments
Reflecting on the People We Would Never Meet OtherwiseIt'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...Reactions0reactionsComments0 comments
Personal Grooming With a Rare DiseaseLiving 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...Reactions0reactionsComments0 comments
Keeping Your Family Connected When Raising a Child With a Rare DiseaseRaising 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...Reactions0reactionsComments0 comments
