Need a friend to chat with who has seen SOD1 first hand

Hi everyone! My name is Lorraine. This is my first time posting or finding this forum. I'm going to be honest, I'm depressed. I could really use a friend, someone who has seen SOD1 first hand. Maybe a caregiver, who has also lost a family member. 

A little about me... I'm 30, and SOD1 runs in my family. The most recent loss was about 7 months ago. 

My personal email is [email protected] 

would love to start an email exchange. I am not always the most optimistic lately. I swear for creative expression. And honestly, I try everyday to not let ALS ruin the person I am. 

 

Comments

AKNate's picture

Hi Lorraine, I'm so sorry to hear SOD1 runs in your family. My husband was just diagnosed with a SOD1 mutation a few days ago. We're still coming to terms with it & trying to gather as much information as we can. His genetics doctor said it was a rare, slow progressing form of ALS. It has been the hardest few days of our life so far.

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