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...Reactions0reactionsComments5 repliesSymptomsSleepTips & Advice
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
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
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...Reactions0reactionsComments0 repliesAwarenessResearch & Clinical Trials
ALS...He knows he can't walk, but that's it. I think it's a blessing in a lot of ways. He seems...Reactions0reactionsComments3 repliesCoping
I wish others knew that......What is one thing you wish more people knew about living with a rare disease?...Reactions0reactionsComments44 repliesCoping
Dealing w more than one...I pray I finally get the help I deserve!...Reactions0reactionsComments23 repliesAwarenessCopingDepression
How 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, Reactions0reactionsComments33 repliesCoping
Who has GI issues with CMT?...I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues?...Reactions0reactionsComments2 repliesDiet & Nutrition
Transitioning From Pediatric to Adult Care...Do you have any tips for others navigating this, either as a patient or a caregiver?...Reactions0reactionsComments3 repliesCopingCaregivingHealthcare Team
Hope for Cushing’s Disease...I went into remission and ended up now with SAI. I take 10 mg of Hydrocortisone a day and work full time. I’ve...Reactions0reactionsComments1 repliesAwareness
Where do you find support?...Who supports you in a meaningful way? What does their support look like?...Reactions0reactionsComments6 repliesCopingFriends & Family
Sweet Syndrome...Any other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...Reactions0reactionsComments0 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?...Reactions0reactionsComments0 repliesWork & Employment
Workplace Experiences...What kind of experiences (positive or negative) have you had with disclosing to managers or coworkers?...Reactions0reactionsComments2 repliesWork & Employment
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...Reactions0reactionsComments8 repliesDiagnosis
Welcome! Let's Get to Know Each Other....We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's life....Reactions0reactionsComments69 replies
Sponsored: Let Your Voice Be Heard and Help Raise Awareness of Myositis...limitations:“Before my diagnosis, I worked 60 to 70 hours or more a week....
