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 repliesCopingCaregivingHealthcare Team
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
Active 3 days agoHow Do You Cope?...Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?...Reactions 0 reactions Comments17 repliesCoping
Sweet Syndrome...Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...Reactions 0 reactions Comments0 repliesDiagnosis
I wish others knew that......What is one thing you wish more people knew about living with a rare disease?...Reactions 0 reactions Comments25 repliesCoping
