Coordinating Care With a Rare Disease...In fact, my symptoms were presenting a straightforward case of severe type 1 narcolepsy....Reactions0reactionsComments1 comments
Parenting a Child With a Rare Disease and Reflecting on the Power of Pause...When I think about my experience as a parent of a child living with a rare disease, I would characterize the experience...Reactions0reactionsComments3 comments
A Journey to My Authentic Self...I wanted my mental and emotional health to be a priority....Reactions0reactionsComments0 comments
When a Low Probability Feels Scary...As a singer, that was my worst fear....Reactions0reactionsComments1 comments
Disability Pride Month With a Rare Disease...I have a myriad of physical conditions that are indeed disabling at times but I don't fit neatly into a disability "box" –...Reactions0reactionsComments1 comments
Finding a Support Person for Doctor Appointments...If your healthcare team or a local medical school does not provide a case manager for free, you may be able to hire...Reactions0reactionsComments0 comments
Starting a Family When You Have Congenital Adrenal Hyperplasia...Your team may include: Genetic counseling is a valuable resource for anyone with CAH who is thinking about starting a family....Reactions0reactionsComments0 comments
How I Travel With a Chronic Illness..."Still round the corner, there may wait, a new road or a secret gate." – J.R.R. Tolkien Living in a body with a...Reactions0reactionsComments0 comments
5 Rare Life Challenges: A Caregiver Perspective...Having a community-based caseworker can be a great start to finding resources in your area....Reactions0reactionsComments0 comments
Exercising When You Have a Lung Condition...For example, many experts recommend that people with MAC lung disease exercise moderately for 30 minutes a day, 5 days a week....Reactions0reactionsComments0 comments
Webinar: Moments of Mindfulness – A Patient's Perspective...Cultivating a mindfulness habit did not come easily or naturally to Erin Leibowitz, a Patient Leader living with a rare cancer....Reactions0reactionsComments0 comments
What to Expect After a MAC Diagnosis...If a germ changes to the point where a drug does not work on it anymore, this is called drug resistance....Reactions0reactionsComments0 comments
What Makes a Rare Disease Patient Advocate?...We are constantly trying to create awareness and aim to make the world a better place to live with a rare...Reactions0reactionsComments2 comments
Tips for Navigating Gatherings With a Rare Disease...The gluten-free diet is a medical requirement, not a choice.” I can then re-direct the conversation to a different topic....Reactions0reactionsComments0 comments
So You Have a Rare Disease… Now What?...Here are a few words of wisdom to focus on if you’ve been diagnosed with a rare disease: Acceptance is a...Reactions0reactionsComments2 comments
Caring for a Child With X-linked Hypophosphatemia...Here are a few ways you can make a difference:Caring for a child with X-linked hypophosphatemia is complex and requires medical care...Reactions0reactionsComments0 comments
Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the Home...Though I am no expert, I highly suggest that you draw out scenarios A, B, and C and be prepared...Reactions0reactionsComments0 comments
Living an Authentic Life With a Rare Disease...Just a few weeks after getting a bad flu, I started exhibiting narcolepsy symptoms....Reactions0reactionsComments0 comments
Yes, You Can Travel as a Dialysis Patient...While having this a letter from your dialysis team shouldn't be necessary, it can help a lot....Reactions0reactionsComments0 comments
My Rare Disease Does Not Make Me a Burden...I recently came across a journal article discussing the "challenges" of parenting a child with my rare disease....Reactions0reactionsComments1 comments
