September 23, 2010 at 6:45 am #73227French Gene Splicing
I had an appointment with my neurologist recently and he was very excited about some recent developments in France concerning gene splicing for muscle conditions. I have Myotonia Congenita and he reckoned that if the current research is successful then it could have a massive impact on people like me, that is, anyone with a genetic muscle mutation!
Has anyone else heard about this?TygerTygerParticipantPosts: 283Joined: 08/09/2010September 23, 2010 at 11:17 am #76749Re: French Gene Splicing
I can’t think of anything that exactly fits your description but there was some success with gene therapy in France recently for a blood disorder:
Could this be it do you think? If you send me a direct message with the doctor’s name then I could find out some more specific information. I’d be very interested to know about it too!
Kristina.kelvidgeParticipantPosts: 113Joined: 07/09/2010September 23, 2010 at 5:54 pm #76750Re: French Gene Splicing
I am seeing my Neurologist next Feb for my annual checkup, i will be sure to ask him about this. I asked about Hyperbaric therapy last time i saw him but he was unmoved, pity that is not available as the National Hyperbaric Centre is not far from me.
I hope for a cure mostly for my 2 daughters who are both carriers but i would still be very interested in anything that might help me.ranaldParticipantPosts: 747Joined: 05/09/2010September 25, 2010 at 9:13 am #76751Re: French Gene Splicing
Thanks for replying Kelvidge and Ranald.
My doctor was not specific unfortunately and I got carried away with his genuine excitement. He may see a future opportunity to be involved in this treatment through me?
I’ve not yet found anything on the web about it but I have no reason to doubt his sincerity so I’ll keep looking and post my findings here.TygerTygerParticipantPosts: 283Joined: 08/09/2010May 27, 2011 at 5:33 pm #76752Re: French Gene Splicing
My son has a mutation in the ACTA 1 gene which has caused congenital fibre type disproportion. We do not know of anybody else with the condition and would be interested to hear from anybody with similar conditions.jasmine1ParticipantPosts: 16Joined: 27/05/2011May 31, 2011 at 1:20 pm #76753Re: French Gene Splicing
We have a service called MD Links which can help to put you in contact with other people with the condition. More information here:
If you would like to join MD Links please contact us on 0800 652 6352 or firstname.lastname@example.org
You might also be able to find people on this forum more easily if you put the name of the condition in the subject line. You could make a new topic. Perhaps the “Its my Life” section of the forum might be the best place because that has the most visitors.
Hope this helps,
Kristina.kelvidgeParticipantPosts: 113Joined: 07/09/2010
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