Marfan's Syndrome

**conceited** · Posted On: 11/06/2008 3:50pm

Over the past month I've been diagnosed with this particular syndrome which has effectively put a halt to my MA training, indefinitely.

Here's the tl:dr version: I am curious if anyone out there has it, or knows someone with it. Because I want to stay in shape but according to my doctor, whom I'm convinced knows nothing of this syndrome nor martial arts, that all the stuff I used to do to keep in shape: Running, Weight training, wrestling, martial arts, basketball, football, swimming, are a big no no. More importantly, do you know anyone with it that does a martial art, and WHICH martial art?

I know this is weird but martial arts and sports have been such a big part of my life for so long that, now that it's gone I am kind of at a complete loss, and any input would be appreciated from my fellow bullies.

Here's the detailed version: feel free to skim or bypass entirely.

My Stats 24 years old, 5'11/6'0, 180 lbs, perfect vitals with a slightly lower heart rate than usual about 50 or so.

The Diagnosis I have had constant chest pains for the last six weeks, about two weeks in I was wrestling with my nephew and his friends and started having severe chest pains, I thought maybe a heart attack so I went to the ER. They took chest x-rays, CT scans, MRI's, sonar, the whole works and saw I had an indented chest, mild scoliosis, incredible flexibility, insane reach, poor vision, angina etc.. and sent me to several specialist who over the course of two days diagnosed me with Marfan's Syndrome.

The Prognosis My doctor who is a fat man, and hates the idea of martial arts. Recommended I take up golf or bowling.(I almost punched him)

I cannot do anything that would get close to maxing out my heart rate because it could rupture my aorta and cause instant death, (just add water.) Maybe I'm being bullheaded, but this is stupid to me, because before I found out I had this I maxed out my heart rate 6 days a week for 11 years and never once died. (Not even a single time!)

I cannot be punched in the head or the chest. A punch to the head could cause my lenses to become loose causing permanent blindness. A punch to the chest could cause my heart to explode, or something (can't remember exactly.) Which again, I've been punched in the head and chest so many times it's ridiculous and I can still see and breath.

The Disease The disease means the connective tissue in my body is extremely weak. It's a disorder that lasts your whole life and existed since you were born. Which since I've had the same doctor damn near my whole life and he didn't even catch this glaring fact makes me lose even more faith in him. Anyway, if anyone would be willing to give me some advice or just an opinion on this I'd really appreciate it.

- Joe

***DerAuslander*** · Posted On: 11/06/2008 3:52pm

Get a second opinion.

Possibly a third.

Never take one doctor's word.

**conceited** · Posted On: 11/06/2008 3:55pm

Yea, I know for a fact I have Marfan's three specialist plus my regular confirmed it.

I'm in the market to find a Marfan's specialist right now, but I can't find jack in my town. I'm currently shopping in Kansas City to see if there might be someone down there. I've also initiated some e-mail chats.

**1point2** · Posted On: 11/06/2008 3:58pm

That really sucks. Wow. That's a rough diagnosis. I would take the doctors' advice and not do things that would potentially blind or kill you.

In all seriousness, maybe there are martial alternatives?

Side note: this is particularly jarring/unnerving because your stats (minus the indicative ones) are so similar to mine. I feel your pain.

**conceited** · Posted On: 11/06/2008 4:01pm

That's kinda what I'm hoping, but something tells me I'm going to wind up being that old man in the park practicing tai chi.

Maybe I could find an art with some sweet kata. :P

**patfromlogan** · Posted On: 11/06/2008 4:03pm

Originally Posted by DerAuslander108

Get a second opinion.

Possibly a third.

Never take one doctor's word.

ditto, and I'd go to various alternative meds and Chinese med (historically lot of JJ guys were healers and massage etc) as a local Shihan has caught and corrected some conditions that the mds had missed or misdiagnosed. Ask around plenty for help, like here my massage lady knows who the best chiro is and so forth.

And if the dr is The Correct, you have two choices:
1. Work out hard and maybe die. ****, we all die anyway.
2. Tai Chi, and despite what many here say, that stuff is well worthwhile if it's under someone good, like Ben Lo or some of his students - the local school here has older multi system bbs in it because they can do still do it (while Judo and such just get too hard on the joints) and it works just fine. Most of the TC is bs, Salt Lake City for instance doesn't seem to have ANY real ma tc, but it does exist.

**patfromlogan** · Posted On: 11/06/2008 4:04pm

Originally Posted by conceited

That's kinda what I'm hoping, but something tells me I'm going to wind up being that old man in the park practicing tai chi.

Maybe I could find an art with some sweet kata. :P

Well at least maybe you BE that old man... rather than a handsome dead guy.

You might find some sweet girls doing kata but in Wado and KK the kata is done hard and up to 20 times with out a break.

**1point2** · Posted On: 11/06/2008 4:06pm

Is the condition serious enough for a support group, maybe online or something? They could give advice on how to stay active and work around the situation.

**1point2** · Posted On: 11/06/2008 4:11pm

http://www.marfan.org/ says it's "variable expression," ie, you can have it hard or not so bad. How severe is it in your case?

**conceited** · Posted On: 11/06/2008 4:15pm

Thanks fug, I'm considering it but there's no tai chi around here. Probably some in KC though if I get desperate enough.

@1point2: There is one online, unfortunately it's also rare enough to not have one locally. I haven't actually started talking with them, but I have shot a few e-mails.

scroll down on this list and you'll see a list of "recommended" activities: http://www.marfan.org/nmf/GetSubCont...menu_item_id=7

But I genuinely believe these people are not educated well enough on martial arts and that there has to be some martial alternatives. Notice how they lumped Martial Arts all together in one category? Maybe a list like that with styles would be more helpful but I can't find one.