What is the most annoying unsolicited advice you've heard?...What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...Reactions0reactionsComments21 repliesCoping
Try Walking in My Brace...Life with a bleeding disorder makes getting around a whole lot harder as I age. I have moderate hemophilia and consider myself lucky that I only have one recurring problem...Reactions0reactionsComments0 comments
ALS...My 70 year old husband was diagnosed with ALS 1 month ago. He has dementia as well. He doesn't comprehend what's going on or what's wrong with him. He knows...Reactions0reactionsComments3 repliesCoping
Not Medically Fragile...My daughter was born with a rare form of muscular dystrophy called nemaline myopathy. She was three before we knew something was different with her. She was just a little...Reactions0reactionsComments2 comments
Caring for a Child With X-linked Hypophosphatemia...X-linked hypophosphatemia (XLH) is a genetic disorder that affects how the body processes phosphorus (phosphate). Phosphorus is an essential mineral for healthy bones and growth. When XLH the body does...Reactions0reactionsComments0 comments
High red cells and tired constantly....I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have a high red cell count, it's at the...Reactions0reactionsComments5 repliesSymptomsSleepTips & Advice
Managing Stress and Chronic Illness...Stress is one of those factors that can really impact our overall health. Stress can affect the body in many ways, with symptoms affecting your body, mood, and behavior. If...Reactions0reactionsComments0 comments
Dermatomyositis...I don’t know anybody else who has dermatomyositis. It is hard wearing all the stuff I need to in order to keep the sun off my skin and explaining this...Reactions0reactionsComments6 replies
Rare Diseases and Preparing for an Emergency...Medical emergencies are certainly no fun, especially when a rare disease is in the mix. However, being prepared for a potential emergency can make the nightmare of a situation slightly...Reactions0reactionsComments2 comments
My MG Journey...I’ve always fallen down since childhood. Doctors didn’t know what I had. Never had enough strength to play kickball. Until I could. And then I couldn’t. I was smaller than...Reactions0reactionsComments1 comments
Community Views: The Hardest Symptoms to Manage...There are many challenges to living with a rare disease. The challenges may be physical, mental, and emotional. Having a rare disease means many people will not understand your health...Reactions0reactionsComments0 comments
How has living with a rare disease impacted you?...Those living with a rare disease are often the experts on their disease. To better understand the patient experience and realities of rare diseases, we are fielding our first Rare...Reactions0reactionsComments0 repliesResearch & Clinical TrialsAwareness
5 Things About Mental Health and Life With Rare Diseases...May is Mental Health Awareness Month. Like many in the rare disease community, maintaining my physical and mental health is ongoing work for me. Recently, I've been working to improve...Reactions0reactionsComments2 comments
Doctors and Specialists Who Treat X-Linked Hypophosphatemia...People with X-linked hypophosphatemia (XLH) develop a wide range of symptoms such as weak bones and teeth, fractures, fatigue, and muscle weakness. This life-long condition requires treatment on several fronts...Reactions0reactionsComments0 comments
undiagnosed with normal blood work...These are my symptoms and I just wonder if anyone else has the same thing and has been diagnosed with something where medicine or therapy has helped. My symptoms are...Reactions0reactionsComments8 repliesDiagnosis
Understanding Non-apparent Disabilities in the Workplace...About 1 in 4 American adults live with a disability. Many people living with a disability are able to work and do. For those with an invisible disability, the decision...Reactions0reactionsComments2 comments
What could workplaces do to foster a more disability-inclusive culture?...What ideas do you have for employers to create a more supportive work environment for people with visible or invisible disabilities?...Reactions0reactionsComments0 repliesWork & Employment
Workplace Experiences...Has your rare disease impacted you in the workplace? What kind of experiences (positive or negative) have you had with disclosing to managers or coworkers?...Reactions0reactionsComments2 repliesWork & Employment
Webinar: Moments of Mindfulness – A Patient's Perspective...What do people mean when they talk about practicing mindfulness? What are they actually doing? How much time does it take? Do you have to do it every day? How...Reactions0reactionsComments0 comments
Where do you find support?...Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed...Reactions0reactionsComments12 repliesCopingFriends & Family
