Ongoing discussions - Corpus callosum agenesis
- Arnold Chiari Malformation
Hi, I was diagnosed with Arnold Chiari Malformation Type1 June 2006. This is a rare condition of the brain. I am still learning about this condition as nothing was ever explained to me by my neurologi
- Trigeminal neuralgia
Hi I found out in December 2016 that an ear and sinus pain was an neuralgia pain called trigeminal neuralgia. I'd never heard of it before. It's a rare disease or condition without a c
- Arnold chari malformation
Hi Folks I am new on here I was looking to see if anyone on here is suffering from an Arnord chari malformation?
- What is the most frustrating or difficult aspect of living with a rare disease?
Hello everyone, How are you today? As you already know, a diagnosis of a rare disease can have a huge impact on one's life. It can bring new insights and information, but also many questions, cha
- How were you diagnosed with a rare disease?
Hello everyone, How are you doing? What were the first symptoms you experienced? How were you diagnosed? @Hyakkimaru @Jo1977 @paul1798 @Alisondenise @Courtjack1 @gerdec2007 @Bazz