Need a friend to chat with who has seen SOD1 first hand
Submitted by Lorrainepacy on Sun, 09/11/2016 - 23:10
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.
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AKNate
Sat, 10/29/2016 - 17:30
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Hi Lorraine,
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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