Antibiotics experience: Azithromycyn, Ethambutol and Refampin...A member is interested in feedback from the community from anyone who has taken any of the above antibiotics with some degree of success....Reactions 0 reactions Comments0 repliesSide EffectsTreatmentTips & Advice
what are some tips for managing rar disease?...Follow the Treatment Plan: Management of a rare disease often requires following a specialized treatment plan....Reactions 0 reactions Comments0 repliesDiagnosis
Environmental Allergies Or No...I have a new doctor and I tried to tell him this is the only thing that works....Reactions 0 reactions Comments2 replies
FeaturedDietary Changes...Today is the first day since my diagnosis a month ago that I have just felt completely overwhelmed by it all....Reactions 0 reactions Comments7 repliesCopingDiet & NutritionNewly Diagnosed
Holidays with a Rare Disease...The holidays can be exciting but also come with many challenges for those with rare diseases. What special considerations do you have to take into account during this time of...Reactions 0 reactions Comments1 repliesFriends & FamilyCoping
Caring for a child with a rare disease...This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story....Reactions 0 reactions Comments0 repliesCaregiving
Madelung's...He did have a somewhat successful surgery from a thoracic surgeon quite a few years ago....Reactions 0 reactions Comments3 replies
What does advocacy mean to you?...Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few...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
Traveling With a Rare Disease...How do you prepare for a long or short trip? Do you have any tips to share with the community?...Reactions 0 reactions Comments4 repliesTravel
Rare Disease in Children...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
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 endocrinologist Wednesday....Reactions 0 reactions Comments2 replies
CIDP (Chronic Inflammatory Demyelinating Polyneuritis)...I would love to hear from people who have it, what kind of treatment they get, a little pathophysiology, and how others deal with it....Reactions 0 reactions Comments0 replies
ALS...I think it's a blessing in a lot of ways. He seems content to stay in our bedroom (lift chair, bed and tv)...Reactions 0 reactions Comments3 repliesCoping
High red cells and tired constantly....I drink 2 litres of diluted water everyday and eat healthish. Anybody else have similar symptoms?...Reactions 0 reactions Comments5 repliesSymptomsSleepTips & Advice
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
Where do you find support?...Who supports you in a meaningful way? What does their support look like?...Reactions 0 reactions Comments0 repliesCopingFriends & Family
Transitioning From Pediatric to Adult Care...Do you have any tips for others navigating this, either as a patient or a caregiver?...Reactions 0 reactions Comments3 repliesHealthcare TeamCopingCaregiving
Hope for Cushing’s Disease...I take 10 mg of Hydrocortisone a day and work full time. I’ve had to be my own advocate. Read, research and ask questions!...Reactions 0 reactions Comments1 repliesAwareness