Thursday, 28 February 2013

Marfan's and Me

I really didn't expect anyone to correctly guess the potential genetic disorder that I have. But well done Lizzie, most of the time I've given you shout-outs because of recipes that I've tried to copy from your blog. But today, it's because you were the only person to guess what health problem I might have.

The rest of you get a gold star for effort.

Or an A if you want.

But what is Marfan's? Basically, it's a connective tissue disorder. Tissues that support various organs in the body may not form or develop as they should. Some people get faulty skeletons, others get hearts that don't work as efficiently as they should, and unsurprisingly I think I got stuck with defective lungs.

There were numerous reasons why I was suspected to have Marfan's. Fairly tall, thin, with elonganted fingers, small chest indentation, narrow face, the collapsed lungs and lung cysts, sleep apnea, general fatigue, poor blood circulation.

It's not surprising that my friends are dubbing this "Slenderman Syndrome".

Close enough.

But as most people would guess, it's the inefficient heart that are the killers in this disease. Weakened heart tissue and valves are not something to be taken lightly. This is why I went for the echocardiogram the other day, to see if my heart has any problems yet.

Lots of people generally go for heart surgery to try and fix things up. The technician for my echocardiogram was telling me how she had a friend who had Marfan's, and said friend needed the surgery so she could give birth safely.

However, I still think the scariest thing about Marfan's is that I could be dead by 30. 30.

Remember, I'm only 22, turning 23 later this year. 

Did I mention that Marfan's has no cure?

Luckily, there's heart medication for me (if I should need it) and that'll extend my lifespan to about 70. Not optimal, but still a huge improvement.

My doctor also didn't seem too worried, because a lot of the health problems I have are could simply be due to being so tall and thin. And again, not much they can do for me anyways even if I am diagnosed with Marfan's besides what I'm already doing. Which is dealing with the symptoms as they appear.

I'll have something more concrete in April when I see that specialist. My doctor hasn't called back about the echocardiogram yet so I guess that means everything is fine?

I hope.


  1. It sounds like you will be alright then, until, lol.

  2. At least IF you get this diagnosis, your doctors may have a better idea of how to treat your symptoms...and you'd be in good company with Abraham Lincoln :) I'm sorry you have to deal with such health issues at your young age. Thanks for your kind words regarding my FIL.

  3. Well if you do have it, then I hope that it's pretty controllable. It sounds like it is. I'm just glad you have answers. Even if they're bad ones.

  4. Ugh, that's so scary! Sorry to hear that.

  5. Slenderman syndrome doesn't sound pretty. But eh, I have confidence that you'll make it way past 30, even without the meds. You've been hanging in here for so long already, so yeah. ;D

  6. God knows with doctors as they take their sweet time. Hopefully it isn't that.

  7. Bummer, man. You're very young to have such a chronic condition but the good news is the doctors have diagnosed it. They will monitor and treat the symptoms as they arise. You'll live to a ripe old age! And I'm counting on it because you are precisely in the age group whose working lives and payment of taxes will provide my old age pension starting in a few years.

  8. Well I'm 21 :)
    That's good that you have ab option to get well...well if your doctor hasn't call you should wait for some time and then call by yourself for the info ! :)
    Get well soon :)

  9. Oh.. well good luck, and hopefully WebMD was just being a douche.

  10. Wow Damien, that's absolutely terrible man, scary as hell that it could reduce your lifespan so much, hopefully you take these tablets and that sorts everything out or even better you don't have Marfan's disease, it sounds so scary dude, no matter what though, until they tell you outright it's that disease try not to worry so much about it, worrying is half of the problem at times.

  11. just drink some whiskey, that'll fix your tissues and put hair on your chest.

  12. Believe it or not, Marfan's crossed my mind, but since you hadn't mentioned height I decided not to guess that. Did you know Abraham Lincoln had Marfan's?

  13. I hope you get good news, too.

  14. At least if it does turn out to be Marfan's, you'll know for sure what's causing all of your symptoms. Sucks that there's no cure, though.

  15. you will not be dead by 30, Damien, don't be silly. You will outlive us all, mark my words....

  16. Defective lungs... Crap, that sounds familiar. But Marfan?

  17. Man up:

    How soon hath Time, the subtle thief of youth,
    Stolen on his wing my three and twentieth year!
    My hasting days fly on with full career,
    But my late spring no bud or blossom shew’th1.
    Perhaps my semblance might deceive the truth,
    That I to manhood am arrived so near,
    And inward ripeness doth much less appear,
    That some more timely-happy spirits endu’th2.
    Yet, be it less or more, or soon or slow,
    It shall be still in strictest measure even
    To that same lot, however mean or high,
    Toward which Time leads me, and the will of
    All is: if I have grace to use it so,
    As ever in my great Task-Master’s eye.

  18. I'm glad to hear that you are getting some answers. Knowledge is power and I never buy into time frames. You will be around as long as want and are meant to. You have a terrific voice and make this blogosphere alot more fun. I believe that you will be here with us for a long,long time. I will keep you in my thoughts and prayers.

  19. It is scary to suffer from anything at any age, but when you you can feel robbed. Like Liz said if they can at leats give a 100% diagnosis you can only be better informed on how to deal with it. 70 sounds WAY better!