CMT type 4c1, hEDS, PsA, Fibro, Ichthyosis I wish Drs wouldn't laugh off multiple diseases. Even a dna test didn't help. " only thier clinical opinion matters, not a dna test. I paid for my own dna...reactions3repliesCopingDepressionDiagnosis
MSL2 syndromeHi everyone, at first sorry for my english I didn't write for a long time and I live now in Germany. Our 7 years old son has after cca 5...reactions1replyDiagnosis
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions95repliesCoping
The Career DebacleManaging a career with a rare disease can be challenging, especially if you have just learned about the condition, like my ultra-rare Gillespie syndrome. Though I wouldn’t quite call it...reactions3comments