Doctors can not figure out wife's medical issue...Its not every time but its at lest 2-3 times a week. Sometimes it lasts a day other times it can last...reactions3repliesSymptomsDiagnosisTreatment
1 year later, no diagnosis...They suggested we go to Cleveland Clinic in Ohio, which we will be going to in October....reactions1replyDiagnosisTips & AdviceSymptoms
Recently been diagnosed ...Yea I don't get colds or even covid I get this?! You can't see the rash on my face but I have reactions1replyCopingDiagnosisDepression
How to get diagnosed?...I have a rare disease no one has heard of. I've tried to get into a rare disease clinic but they require reactions5replies
Nags and /or citrine deficiency...Looking for others who have NAGS and or Citrine Deficiency. I'm curious of how are others doing with having these rare diseases/deficiencies?...reactions1replyCaregiving
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....reactions1replySide EffectsSymptomsDiagnosis
What life lessons or advice is important to pass on to children and young adults living with a rare disease?...What can parents and caregivers do to help set their children up for success as they grow up? What has been helpful in your...reactions4repliesCaregiving
What’s wrong with my daughter...Hi my name is araselys. My daughter’s name is aniah. Aniah is 16, I took her to the hospital a...reactions3replies
Experimental treatments...even though NIH has proven it to work on certain conditions....reactions3replies
How to Be a Great Friend to Someone Living With a Rare Disease...What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...reactions6repliesCopingFriends & Family
Coping...I'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I have...reactions1replyNewly DiagnosedCoping
Have you ever seen your rare disease represented in the media?...How did it make you feel? Did you feel it was an accurate depiction?...reactions3repliesAwareness
Rare Blood Cancer: Waldemstroms Macglobanemia...Living with a rare blood cancer is challenging. On a BTK Inhibitor has to be careful of side effects....reactions1reply
help: Persistent Sensation of Heaviness from Clothing on Chest! – ruining my life!...This sensation worsens when I think about it or if my head is in a certain position, but it tends...reactions3repliesTips & AdviceSymptoms
Recognizing the Symptoms of Eye Conditions...If you experience any unusual changes in your vision or eye discomfort, seeking prompt evaluation by an eye care professional is essential....reactions3repliesSymptoms
Mystery...This is what’s in my skin, actually came out of my ear, but is spread all over my body...reactions4replies
Undiagnosed with neurological symptoms and multiple misdiagnoses...I went to my GP at the time, who told me it was stress related and to try to relax. reactions4repliesDiagnosisSymptoms
Symptoms of Eye Vision Damage?...People might also experience difficulty seeing at night or in low-light conditions, increased sensitivity to glare, or sudden loss of vision in one...reactions4repliesSymptoms
Looking for rare disease advocates for a podcast....I am trying to turn it into a nonprofit and need board members, If you are interested in joining me I...reactions1reply
