Shones syndrome

[Mdea1988]

Anyone else here with shones syndrome? I have only ever met 1 other person with the condition when i went to royal brompton london in 2018 for double mech valve surgery. to my knowledge its a very rare.

[Hidden]

Sorry to hear of you problem I have not got shone syndrome, I have ebsteins anomoly. Another rare one. But the one thing I have found is the majority of people with my condition have had some form of operation at bith or at a younger age. I have only communicated with one other person. Who was found to have my issue late in life with no operations. And the person is in America. Does make me feel a bit lonely. Even though I would not wish any congenital heart disease on any one.

[Mdea1988 in reply to Hidden]

I've not heard of that, I get what you mean 100% feels lonely at times When it comes to seeing my gp they generally say they don't want to give me medication etc unless it's cleared by cardio. All in total I've had 6 ops since birth all had to be open heart due to the complications caused by shones. I'm 35 but physically feel like in 80 most days and I loved been busy and walking but now I struggle with doing things 2 or 3 days in a row without been tired. Hoping to find ways to keep occupied indoors I enjoy reading and doing cross stich.

[Hidden in reply to Mdea1988]

The trouble with congenital issues such as ours but definitely with mine. Many people in the medical profession have not heard of it . My doctor said to me when he first heard what I had , he said I have been a doctor for 20 years never heard of it. Then when I went to hospital in March because of chest pains the nurse said have you got copd no I said I have ebsteins anomoly. Never heard of that. So a felt like saying do you me to explain it to you. I suppose I have been lucky to get to nearly 60 without any surgery and have been reasonably active. And in a physical profession. But the shock has definitely hit me hard. The trouble is that iam not amenable to having any operation. This could cause more problems so a heart transplant has raised its head but nothing being sorted as yet. The condition will be managed with medication and monitoring . But I do feel that we who where born with these issues didn't not ask for it and unfortunately we did not cause these problems they happened due to genetics and other functions in the process of being made in womb. But I do get angry with myself and frustrated with my self. But it is hard when you are not like your peers. And that is what hurts.q

[Yumz199725]

Hi I've never heard of this defect but I just looked it up its rare! Wow how are you doing x???

[Mdea1988 in reply to Yumz199725]

Hiya, been thru the ringer with it had other complications along the way too which cardiologist put down to last surgery, I had 2 strokes and a heart attack over the 3 years after but with no knowing for sure unfortunately. Keep going day by day some days I feel like in 80 other days I feel some what younger but rarely 35 lol.