My disease...I was coerced by the Dr. involved.. into having an "open lung biopsy,"..by way of being told that if I did NOT...Reactions 0 reactions Comments1 replies
What does advocacy mean to you?...Are you involved or want to get involved in advocacy for your rare disease? Tell us what you're up to! Looking to learn...Reactions 0 reactions Comments2 repliesAwareness
Red rash in my mounth...I have red "rash" or something in her mounth for more then 2 months. What do you think this is?...Reactions 0 reactions Comments1 replies
Active todayInvisible Illness...What aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments46 repliesCoping
Traveling With a Rare Disease...Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with...Reactions 0 reactions Comments4 repliesTravel
Rare Disease in Children...Were you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little warrior!...Reactions 0 reactions Comments2 replies
West Nile Virus...Walk very slowly with a cane....Reactions 0 reactions Comments0 repliesTreatmentExerciseCoping
Guys, I'm so rare, it seems I'm the only one here with autoimmune cholangitis...Please tell me I'm not the only one with this diagnosis, here...Reactions 0 reactions Comments1 replies
Addison's Disease ...I have a little information about it, but not much. I was diagnosed in December and finally have an appointment with an...Reactions 0 reactions Comments2 replies
CIDP (Chronic Inflammatory Demyelinating Polyneuritis)...I was an RN but didn't know about this disease....Reactions 0 reactions Comments0 replies
SMS...Does anyone on here have Smith-Magenis syndrome or have family members with it?...Reactions 0 reactions Comments0 repliesCopingTips & AdviceDiagnosis
Multiple chemical sensitivity...I am bothered by smells noises cold and smoke...Reactions 0 reactions Comments1 repliesCoping
Active 3 days agoWhat is the most annoying unsolicited advice you've heard?...What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...Reactions 0 reactions Comments11 repliesCoping
ALS...He knows he can't walk, but that's it. I think it's a blessing in a lot of ways. He seems...Reactions 0 reactions Comments3 repliesCoping
High red cells and tired constantly....I have a high red cell count, it's at the high end of being normal. I take 1500mg gabapentin daily and 50mg morphine sulphate twice...Reactions 0 reactions Comments5 repliesSymptomsSleepTips & Advice
Dermatomyositis...It is hard wearing all the stuff I need to in order to keep the sun off my skin and explaining this Reactions 0 reactions Comments3 replies
How has living with a rare disease impacted you?...As a thank you, if you qualify and complete the survey, you will be given the option to enter a drawing to win...Reactions 0 reactions Comments0 repliesAwarenessResearch & Clinical Trials
undiagnosed with normal blood work...My symptoms are extreme and painful tightness in my hips and lower back as well as unexplained muscle cramping and spasm in several random...Reactions 0 reactions Comments8 repliesDiagnosis
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?...Reactions 0 reactions Comments0 repliesWork & Employment
Workplace Experiences...What kind of experiences (positive or negative) have you had with disclosing to managers or coworkers?...Reactions 0 reactions Comments2 repliesWork & Employment