Parenting a Child With a Rare Disease and Reflecting on the Power of Pause...The day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story...reactions3comments
Long time to diagnosis ...I had symptoms with Bechets when I was 10 yrs old hospitalized with terrible mouth sores and pain. From abused home. No...reactions3replies
Dont know...My wife has igg4-- retroperitoneal fibrosis -- autoimmune disease. She has a lot of things wrong with her. She takes over 40...reactions2repliesCaregiving
Life as the Primary Caregiver: Insights from a Rare Mom...In the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love...reactionscomments
How My Therapist's Questions Help Me Manage Medical Trauma...As a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are...reactions7comments
When You Don’t Want Advice on Your Rare Disease...How many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably...reactions3comments
Extremely rare and ambiguous medical case....Greetings everyone, i hope you are all doing well. Time and energy are a luxury that unfortunately i can’t afford anymore matter...reactions3repliesDiagnosis
Community Conversations: Sharing Our Experiences With Rare Diseases...Every rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses...reactionscomments
Looking for board members for a nonprofit...I have a podcast called rare connection, I am trying to turn it into a nonprofit. With my podcast I am connecting...reactions18replies
Undiagnosed insane symptoms...1st time here. I desperately need help as to why I go numb and loss bodily function and become extremely dizzy if...reactions17repliesDiagnosis
Sponsored: Let Your Voice Be Heard and Help Raise Awareness of Myositis...By argenx Living with myositis is full of challenges. From numerous doctor appointments to managing symptoms and finding a treatment that’s right...
Caring for a Child With a Rare Disease: Vacations? What Are They?...As parents, we cherish the moments when we can create lasting memories with our children, especially during vacations. However, for those of...reactions1comment
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...reactions6comments
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...reactions3comments
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...reactions6repliesMental 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...reactions3comments
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...reactions23repliesAwarenessDiagnosisSymptoms
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...reactionscomments
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...reactions5repliesDiagnosis
