LMNA related DCM

[markhargreaves]

Is there anyone on this forum that has this or a similar gene related DCM ?

[excalibur]

Hi,

I was diagnosed with DCM and AF in 2002. It wasn't clear if the DCM was gene related (I was never tested for this), but my father died from a heart condition in the 1960's and we strongly suspect that it was a similar condition that caused it, though now we have no way to confirm this.

My consultant at Harefield was not able to say whether the DCM caused the AF or whether AF was caused by DCM

In my case following drugs and moderate exercise the DCM has largely disappeared, so maybe what I have is a genetic predisposition to DCM (and AF)

Lance

[markhargreaves in reply to excalibur]

Thanks for your reply & my apologies for not responding sooner. I am glad to hear that your DCM has largely disappeared. I have heard that this can happen but am unsure whether this will be the case with me. The reason I posted was that my son also has this which I unknowingly passed on to him & only found out I had it after he had problems leading to the discovery of his heart issues.

[excalibur in reply to markhargreaves]

I had my son scanned a the time my DCM was diagnosed but as the consuktant said - it was unlikely to show anything. I haven't followed up DNA testing - what caused you to do this?

On the point about my DCM largely disappearing, my cardiologist at Harefield said that if the increase in size is less than about 50%, his experience was that drugs and exercise would ease the DCM.

My DCM was attributed to a possible virus, but I understand that this is just a medical way of saying that they don't know what caused it

[markhargreaves in reply to excalibur]

That made me chuckle with the don't know what caused it line. The Brompton decided to gene test me & my son after my condition was found to see what the link was where they found the Lamin. They said this was quite rare but obviously this must mean others have it somewhere. I think the specialists are moving down this gene route to try & discover how to change things. Not sure whether this is to stop others getting these things or if it can be cured. As I say to my son, there is always hope

[Alixia in reply to markhargreaves]

Hello Mark, this is a very old post, but I wondered if you’re still looking for people with the LMNA gene? There is a great Facebook group called ‘laminopathies support group’ that has nearly 400 members from around the world sharing their experiences.