Shannon Stratton...Shannon Stratton is an artist and research administrator who was born with X-Linked Hypophosphatemia and diagnosed with Rheumatoid Arthritis at 18. Instead...
What It Means to Celebrate Moments as a Rare Disease Family...On my journey, celebrating milestones isn't just about the milestone itself. It's also about our family's journey leading up to it. It's...reactionscomments
Numbness in fingertips, sensations in feet and head all depends on what I eat....Started with numbness in finger tips, then to my feet feeling weird in the morning when I got up, now I have...reactions3repliesDiagnosis
Antibiotics experience: Azithromycyn, Ethambutol and Refampin...A member is interested in feedback from the community from anyone who has taken any of the above antibiotics with some degree...reactionsrepliesSide EffectsTreatmentTips & Advice
What to Know About Rare Motor Neuron Diseases...Motor neuron diseases (MNDs) are a class of diseases that affect certain important cells. These cells, called motor neurons, control the muscles...reactionscomments
Caring for a Child With a Rare Disease...Raising a child is never easy, but it can be especially challenging if your child has a rare disease. There are 5,000...
seronegative gMG treatment beyond IVIG and/or Apheresis...IVIG was a fail for me (tried more than one product) and am currently receiving Apherisis every 3 weeks via an AV...reactions2repliesTreatment
Doctor just said I have some random virus but am wondering if it is true or not....So i went to the doctor today and they said I just have some random virus but do not know if it...reactions2repliesHealthcare TeamSymptomsDiagnosis
My Experience With New Jersey's Personal Preference Program...Have you heard of state Medicaid programs that allow a family member or friend to become a paid caregiver? New Jersey's Personal...reactionscomments
what are some tips for managing rar disease?...Early Diagnosis: First and foremost, it's crucial to get a proper diagnosis as early as possible. Due to the rarity of the...reactionsrepliesDiagnosis
Questions I Ask Myself on My Healing Journey...I started my medical trauma healing quest in the early 2000s, but since 2022, I have made a consistent effort. I have...reactionscomments
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...reactionscomments
3 Things I Learned About Doctors After My Son's Rare Diagnosis...If you or a family member are a rare disease patient, chances are it took quite some time to receive an accurate...reactionscomments
When You’re a 'Poster Child' for Your Rare Disease...I will never forget the day I saw what the more common characteristics of someone diagnosed with MAC lung disease were because...reactionscomments
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...reactions7comments
28 Years...It's been 28 years since I've been going to doctors for help. 28 years since I got congestive heart failure at 32...reactions8comments
A Rare CHANCE Life...My story is about my son Chancely, who is a very strong & vibrant young boy! I started noticing he was sick...reactions3comments
Self-Care Is The Best Care...Simply put self-care means taking time to do things that will protect your well-being and happiness. It’s those things that will pour...reactions1comment
The Impact a Rare Cancer Has Had On My Life...Being diagnosed with cancer 16 years ago changed my life forever. Nothing can prepare your mind, or body to be told you...reactions2comments
My Wild Ride...I was diagnosed with myathenias gravis in September of 2022. I presented with shortness of breath while doing water aerobics. Sounds crazy...reactions4comments
