Because We Can

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http://connectivetissuedisorders.wordpress.com/2013/02/02/have-heart-for-marfan-sydrome/
This my dear friend Katie’s site February
Is Marfan month and in honor of her courage and selflessness I’ve joined her in be effort to raise awareness.
May the kindness and love of others help help the sick of today an tomorrow.
Namaste
Benjamin

36 thoughts on “Because We Can

  1. a devastating illness and wonderful you are helping to spread the word… I had a doc with it tho he managed it well with extreme diet, same extreme exercise and faith.

    may you have a good night. hoping your day wasn’t too trying! xo

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    • Just a mention so that no one gets the wrong idea: “extreme” exercise is actually very dangerous for people with Marfan Syndrome. It is not recommended to elevate the heart rate above 120 (100 if you’re on beta blockers) or partake in heavy weightlifting, contact sports etc. We’re at 250 times greater risk of aortic dissection (which can be fatal) so we must be very careful with our exercise. We also tend to be easily injured as well (strains, sprains, dislocations, tears etc).

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      • Katie,
        I’d like to clarify my comment yesterday lest anyone get the wrong idea.

        My doctor was a strict Seventh Day Adventist. His diet was according to the church’s philosophy. No sugar, vegan, no alcohol or smoking, etc.

        As for exercise, he walked every morning. Because he was a doctor, he knew what he was doing regarding hazardous extremes. I do not.

        I never meant my comment to be advice ANYONE would take as a treatment plan. I was supporting this post. Also things have greatly changed since the 1990’s in the diagnosing and treatment of MFS.

        I was simply saying what I knew had helped him at the time. I never said I knew the outcome because I don’t. He gave up his practice and I lost touch with him.

        Linda

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    • Linda,
      Don’t worry, no malice at all was meant by my comments, not in the least. I just wanted to make sure everyone knew the facts and what was considered safe so there would be no misunderstandings or the wrong information being passed along.
      πŸ™‚
      We’re talking about MFS which in itself is a wonderful thing!
      -Katie

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  2. Pingback: Because We Can « YouOnlyLiveOnce

  3. Wow I’d never heard of this before, scary how our bodies can rebel against us!
    Just had a read up on what it is and I do wonder if someone I went to school with might have it after looking at the predispositions in their body.
    It’s always good to spread the word on anything like this and you’re an angel in disguise for doing so!
    Hope you’re having a good day xox

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  4. Pingback: Marfacts 3&4 and Thanks! « Connective Tissue Disorders: My Journey

  5. One of my best friends has Marfan’s syndrome, as do her daughter and her grandson. It is annoying and you do have to really know your body and when it’s changing or something doesn’t feel right. Luckily, I guess my friend’s have a different strain as theirs doesn’t seem to be as difficult. Yes, it can be fatal, so I guess I should be quite thankful that they don’t seem to have trouble from it very often. Blessings and prayers for your friend! πŸ˜€

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