When Living With a Rare Disease Negatively Affects Sex LifeSigh… I hesitated writing about this topic out of the initial shame I felt in even having gone through any of what I am about to share here. But I...Reactions0reactionsComments5 comments
How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How long do you want to live?" She explained...Reactions0reactionsComments9 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
Participating in a Focus Group as a Rare Disease PatientRecently, 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...Reactions0reactionsComments0 comments
When a Rare Disease Diagnosis Brings Clarity (And New Concerns)At age 65, I was diagnosed with cystic fibrosis (CF) by National Jewish Health (NJH) in Denver 6 months after I took myself there for a MAC lung disease evaluation...Reactions0reactionsComments2 comments
Living Life With Rare Diseases: Giving Up vs Not Giving UpAs I continue forward in my healthcare journey as a person with multiple rare diseases, I have begun to accept that I need to streamline my life, meaning I now...Reactions0reactionsComments5 comments
