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Help. I'm 22 and my heart is DAMAGED! - Orphan disease

I have several heart issues, including:

- Global hypokinesis of the left ventricle (with a an ejection fraction of 50% with some issues on systolic function)
- Early Repolarization Syndrome (J Wave)
- Left ventricular hypertrophy and slight thickening of the walls of the heart
- Dilated cardiomyopathy
- Alteration in myocardial fiber deformation, mainly in the basal segments on all walls And in the middle segments of the anterior and lateral walls
- Longitudinal strain of less than 15%
- Traces of tricuspid insufficiency (No ischemia)
- Arrhythmias, rhythm and occasional sinus tachycardias on EKG
- Also supraventricular extrasystoles, and alterations in ST-T.

- cardiac catheterization, holter and normal stress test.

I had viral Myocarditis 2 years ago. I was 19 years old at the time.

This disease is currently under treatment, but I have not been given a diagnosis yet.
I have been told about having Orphan disease. is that true?
1 Responses
Avatar universal
Infectious myocarditis is relatively rare, and it is very startling when it occurs, maybe especially in young people (but older folks are pretty darned shocked, too).  Each case is individual, and unfortunately we are only patients like you--not doctors.  You simply must write down your questions and concerns in an organized way and *ask* your doctors, who know your history and have examined and treated you, about this.  Keep at them until you get answers that mostly satisfy you.

On the other hand, please understand that the fact is that your cardiac cath, your Holter, and your stress tests were normal.  That means that at this point, your heart is strong enough to handle normal physical exertion.  This is really very encouraging.

The issue here is that I've asked my doctors (several)but they don't know what the heck is happening to me.
Lately, some doctors have said I have what it seems an Orphan disease
Have you googled 'Orphan Disease'?  It's not *one* disease or condition.  The term just refers to any disease that affects fewer than 200,000 people per year in the US, and because it is so rare, pharmaceutical companies don't see any profit for themselves in developing medications for it.  Hence, it's called an 'orphan' disease.

As for what's happening to you, your history suggests that you have in fact been given a diagnosis:  you seem to have the complications of viral myocarditis, which are being treated as best as is possible.

The trouble is that this condition is not at all understood by medicine or by medical research.  In some patients, there appears to be some kind of autoimmune response causing the inflammation, so steroids like prednisone are given to try to quiet that down.

Because myocarditis is very rare and so little understood, and because each patient is different, it is hard to give a *prognosis*--a prediction of what the future holds for you.  A prognosis may be what is lacking in your case, rather than a diagnosis, for it is certain that your doctors are treating you based on at least a 'working diagnosis.'

There is a Myocarditis Foundation.  You might benefit from googling that and getting their information.
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