Just diagnosed here in Mexico

[Clive Shy Heart Find all posts View Profile Close Clive]

I had low-level chest pain for a morning and went for an ECG, the next minute I found myself on a gurney dressed in one of those green gowns.

I have to say the expertise here in the Mexican public health service has been top notch. I have had three full lab work-ups, two echos, two stress tests, scintillograph scan with and without isotope.

My cardiologist seems to think it is apical, though I do have a murmur. Discussion is on Friday next so I'll see.

I saw on a web site that there had been a successful experiment with gene therapy to treat this. Is there any hope that this will be available in the future?

Secondly, some say it's a recessive gene and some dominant. Which?

Good to see an association exists even if it is too damn expensive for those of us not paid in dollars . . . !

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Re: Just diagnosed here in Mexico

Welcome Clive. I'm glad you have found us. I just wanted to touch on one of your thoughts in your post. HCM is genetic. It is dominant. Either you pass the gene or you don't, and if you do pass the gene there is an almost 100% chance that the person who received the gene will eventually express HCM. Nothing is ever 100% of course. It's sort of like brown eyes. If you have brown eyes and you pass that gene to your child he/she will have brown eyes regardless of what color eyes the other parent has. It overrides. I'm sorry I'm not more informative right now. Hopefully others will write you soon.

Reenie

[Sarah Brave Heart Find all posts View Profile Close Sarah]

Re: Just diagnosed here in Mexico

Dear Clive,

The web site is free, our advice is free. Please read the rest of this web site (not just the board) for more info on HCM and its treatment.

HCM is autosomal dominant --if you have it, each one of your children has a 50/50 chance of having it.

The only genetic treatment available right now is if you have HCM due to Fabry's disease. Please see this post for info on that: http://www.4hcm.org/phpBB2/viewtopic...ghlight=fabrys

HCM is its own genetic disease, but it is also a side effect from a couple other genetic diseases, like Marfan's and Fabry's.

Take care and keep us posted,

Sarah

[Clive Shy Heart Find all posts View Profile Close Clive]

Re: Just diagnosed here in Mexico

Just went for my discussion, following all the tests they did last week (another echo, PET, stress) and got 'the good news and the bad news'
Seems the good news is that my HCM is mild, no obstruction. The bad, is that I have furred-up arteries. But they at least can do something about that, so now I am scheduled for an angioplasty.

[Sarah Brave Heart Find all posts View Profile Close Sarah]

Re: Just diagnosed here in Mexico

Dear Clive,

Well---congrats and I'm sorry? Keep your chin up and keep us posted on how you are doing.

take care,

S

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

Re: Just diagnosed here in Mexico

I saw on a web site that there had been a successful experiment with gene therapy to treat this. Is there any hope that this will be available in the future?

This is not acurate information there is no gene therapy for HCM. Yes we can find the gene in many families but no treatment has been created based on altering the gene.

I am glad you found the web site and do hope you find it useful.

Be well,
Lisa

[Clive Shy Heart Find all posts View Profile Close Clive]

Re: Just diagnosed here in Mexico

I should have added, that the experiment was done on animals, not humans.
The replacement genes were introduced using an adenovirus as the carrier; the experiment was reported as successful.
If it can be done on animals, I don't see why the strategy cannot be extended to humans. . . I'll try to find the relevant web site if you are interested?

Best wishes
Clive

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

Re: Just diagnosed here in Mexico

He is my thinking on the genetic therapy at THIS time:
HCM is a disease that is compatible with normal life span - The gene may or may not express itself in the carrier - and if it does express the chance of it being life threating is hard to tell...
Genetic therapy is very new and very dangerous - in 20-30 years MAYBE something MAY be ready - but it will not help those who have already developed the disease as the scar tissue/ myocardioal disarray is already in the heart.

Treatments are our immediate future - -better treatments are the key NOW.

Yes we must keep thinking "out of the box" but not to the degree where we look to the furture and forget to look at the present.

Be well,
Lisa