How to Advocate for Yourself in Social Situations With a Rare Disease...Learning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up for oneself in social situations. Here are a...reactions3comments
The Career Debacle...Managing a career with a rare disease can be challenging, especially if you have just learned about the condition, like my ultra-rare Gillespie syndrome. Though I wouldn’t quite call it...reactions3comments
Rare Blood Cancer: Waldemstroms Macglobanemia...Living with a rare blood cancer is challenging. On a BTK Inhibitor has to be careful of side effects. Trips to Boston from North Carolina at least every three months...reactions1reply
How to Deal With Letdowns in Your Awareness Efforts...As I shared in a previous article, rare disease advocacy can include writing and requesting proclamations. Proclamations can be made by organizations and at various levels of government. In my...reactionscomments
Job-Seeking as a Caregiver for a Child With a Rare Disease...Finding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with a rare disease. Complex situations and unique challenges...reactionscomments
help: Persistent Sensation of Heaviness from Clothing on Chest! – ruining my life!...I'm a 19-year-old who’s been dealing with a frustrating issue since I was around 8 years old, and it's really starting to wear on me, especially because I'm big on...reactions3repliesTips & AdviceSymptoms
When Living With a Rare Disease Negatively Affects Sex Life...Sigh… 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...reactions5comments
Jake Marrazzo...Jake Marrazzo is a writer, author, and patient advocate living with Duchenne muscular dystrophy. He was diagnosed at 8-years-old, and was in a wheelchair by age 12. Since then, he...
The Power of Friendship in the Rare Disease Community: 3 Reasons to Connect...Living with a rare disease can often make individuals feel isolated and misunderstood. However, in this vast and interconnected world, nobody should have to face these challenges alone. The rare...reactionscomments
Reach for the STARS! Why Media Representation Matters...Recently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the beautiful and diverse LGBTQIA+ community. As a queer...reactions3comments
Managing Overwhelm: Giving Ourselves Permission to Take a Moment...Reacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells us we must act now, not later —...reactions2comments
Dear Caregiver......As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything that needs to get done gets done –...reactions5comments
Fertility Preservation for Rare Disease Warriors...In a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden – the preservation of their child's fertility. As...reactionscomments
Recognizing the Symptoms of Eye Conditions...Understanding the symptoms of various eye conditions can help in early detection and treatment, preserving vision and eye health. Common symptoms such as blurred vision, eye pain, redness, floaters, and...reactions3repliesSymptoms
Exploring Non-Drug Pain Management Options...Chronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and it is what led to my diagnosis of...reactionscomments
Mystery...No doctor over many years can diagnosis my skin condition. Hospitals and physicians have no idea what it is. Doesn’t show in blood work. I have researched for many years...reactions4replies
Undiagnosed with neurological symptoms and multiple misdiagnoses...Hi folks! I'm currently seeing a neurologist, who is giving me multiple tests to see what rare disease I may have. About a year ago, I started randomly slurring my...reactions4repliesDiagnosisSymptoms
My Strategies for Living With a Rare Disease Long Term...Living with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line. Hard days can drag into bad days, which...reactions12comments
Symptoms of Eye Vision Damage?...Eye vision damage can present with a variety of symptoms, depending on the underlying cause and severity. Common signs include blurred or distorted vision, which may make it difficult to...reactions4repliesSymptoms
Looking for rare disease advocates for a podcast....I have a podcast called Rare Connection. I am trying to connect rare disease patients with others with the same or similar conditions with it, educate medical professionals and the...reactions1reply
