What to Know About Support Groups...Support groups are a resource and outlet commonly recommended for navigating and coping with an identified life stressor such as a rare disease, a specific health condition, or even mental...Reactions0reactionsComments4 comments
FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges Ahead...Today, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent advocate. On December 8, 2023, the FDA approved...Reactions0reactionsComments3 comments
SILENT STRUGGLES: UNDERSTANDING EATING DISORDERS"...Eating disorders is an acute and serious psychological health stipulation that is noticeable by deleterious eating manners, which can seriously and crucially impact physical health and spiritual or psychological or...Reactions0reactionsComments6 repliesMental HealthTips & Advice
After a Rare Disease Diagnosis: My Avalanche of Comorbidities...When I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how sick you are or how many symptoms you...Reactions0reactionsComments3 comments
METHEMOGLOBINEMIA: AN UNCOMMON HEMOGLOBIN DISORDER"...METHEMOGLOBINEMIA DEFINITION Methemoglobinemia is a blood disorder where an unusual quantity of methemoglobin is generated. Methemoglobin is a formation of hemoglobin in which the iron in the heme group is...Reactions0reactionsComments23 repliesAwarenessDiagnosisSymptoms
Mourning the Loss of the Old Me...I’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn the loss of the old you, and how...Reactions0reactionsComments0 comments
Unknown Illness - Side pain & Snycope ...For the past few years I have seen multiple specialists and had many tests. Physical - Female, white, 32yo, 200 lbs. Historical symptoms: Ongoing: Low blood pressure, bradycardia (normal resting...Reactions0reactionsComments5 repliesDiagnosis
unexplained throat and neck pain for 7 weeks now. ...hi guys. was hoping anybody could help me out. about 7 weeks ago after an upper respiratory infection, i started to have throat pain. it wasnt like a sore throat...Reactions0reactionsComments1 repliesDiagnosisSymptomsTreatment
Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the Home...Every day, parents and caregivers of children with rare diseases face emotional, financial, and logistical challenges. These challenges force us to make sacrifices to ensure that our children get what...Reactions0reactionsComments0 comments
Summer With Sun Sensitivity...I love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails, and nature, and I love being able to...Reactions0reactionsComments0 comments
Do You Take Rare Disease Rest Days?...As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and the energy required to get things done. When...Reactions0reactionsComments2 comments
Treatments for Duchenne Muscular Dystrophy...Duchenne muscular dystrophy (DMD) is a genetic disorder in which the muscles in the body weaken and break down over time. This is due to a mutation, or change, in...Reactions0reactionsComments0 comments
Understanding Duchenne Muscular Dystrophy...Duchenne muscular dystrophy (DMD) is a rare genetic disorder that causes muscle weakness and degeneration that gets worse over time. It is the most common and, unfortunately, one of the...Reactions0reactionsComments0 comments
Colonoscopy to rule out Mast Cell Activation Syndrome......What exactly are they trying to find out from the results of Colonoscopy?...Reactions0reactionsComments4 repliesNewly DiagnosedDiagnosisSurgery
Caregiving, Advocacy, and the Drive to Keep Going...If you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or lost in one way or another? I often...Reactions0reactionsComments1 comments
Disclosure in the Workplace...When it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have, and still do. Perhaps it's not necessary, but...Reactions0reactionsComments10 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
Amyotrophic Dermatomyositis...Anyone taking injection methotrexate for this?...Reactions0reactionsComments0 replies
