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
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, or other challenges?...Reactions0reactionsComments30 repliesCoping
I am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis. I want to know the statistics regarding how many people there are in the world diagnosed with both Neuromyelitis Optica and Myasthenia. Gravis....Reactions0reactionsComments1 repliesDiagnosisSide EffectsSymptoms
CopingI'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I have . I'm still have bad pain ...Reactions0reactionsComments1 repliesNewly DiagnosedCoping
How can we support you?What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...Reactions0reactionsComments12 repliesAwarenessCopingTips & Advice
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...Reactions0reactionsComments44 repliesCoping
Rare Blood Cancer: Waldemstroms MacglobanemiaLiving with a rare blood cancer is challenging. On a BTK Inhibitor has to be careful of side effects. Trips to Boston from North Carolina at least every three months...Reactions0reactionsComments1 replies
Rare Diagnosis ExperiencesHow long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions0reactionsComments90 repliesNewly DiagnosedSymptomsDiagnosis
Symptoms of Eye Vision Damage?Eye vision damage can present with a variety of symptoms, depending on the underlying cause and severity. Common signs include blurred or distorted vision, which may make it difficult to...Reactions0reactionsComments4 repliesSymptoms