My family has been burdened with C9 - we’ve lost 6 amazing people in 2 generations, so far, including my mom, Godfather, and Gramma. I’ve struggled with anxiety over this disease for over a decade now. The anxiety presents itself in the form of symptoms and I trick myself into...
My husband is 35 years old and has lost a cousin, an aunt, 2 uncles, (all to ALS) and currently watches his mom battle the final stages of ALS. His family carries the c9 gene.
Upon visiting with his mom over Christmas (they live out of state) and spending a week surrounded by ALS...
c9 gene anxiety
For the backstory on this thread, please see the original Familial ALS posting. Perhaps a moderator can combine these two?
We have received the gentetic testing results from my husbands brother, who had ALS-like neuromuscular degeneration combined with a family tree with many ALS and...
My husband was dx. In dec. 18 we have very little past family history due to the fact that his maternal grandfather was adopted with no records and his paternal family have all died at young ages ( under 50) except for his father as of now who is 48. Reed is 28 and I am just curious if we...
We are wondering whether to do genetic testing... There have been no more known cases of ALS in our family, apart from my recently diagnosed father. However, a cousin of my dad had MSA and another cousin is now being seen by neurologists with suspected Parkinson's disease. On the other...
I want to share with you our story in full. There are bits and pieces all over the forum, but I wanted to gather everything together. My father received a final diagnosis of MND yesterday.
My father (60) started experiencing symptoms quite a while ago, around the winter of 2016. He...
I 'm french, my father died of als in 2015, he had done genetic testing but the results went after his death and then nobody told us anything. We all assume that it was sporadic. Then, in 2016 my sister went under a IVF procedure and needed the results, bingo: c9orf72.
Hi everyone - I am seeing my primary care doctor tomorrow but wanted to get your opinion on my situation seeing as you have so much experience in this area.
My uncle passed away in Spring 2017 from ALS (he was late 60s) and my dad was just diagnosed with ALS (he is 74). I'm considering getting...
Thank you for adding me/us to the forum. In brief, here is our story: My husband lost his mother to ALS when she was 59 years old. She had one aunt, one uncle, and two first cousins who also passed from ALS. There were a couple other family members who may or may not have had early signs, but...
I'm going to try to keep this short and start by saying I'm actively trying to get into a neuro at the local hospital that deals with neurodegenerative diseases.
Through genetic testing (legit, medical testing done by a Dr.) I was found to have a mutation of the FIG4/ALS11/Sac3 gene. It's...