What is Marfan Syndrome
Marfan syndrome is a connective tissue disorder characterized by unusually long limbs. The disease also affects other bodily structures — including the lungs, eyes, heart and blood...
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MFS Affecting work
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Earlier this year I went to visit my doctor in regards to my health. He was a doctor who had been all over the news, a specialist who is very good at his job. When I related my health problems to him, he tested joints, breathing, muscular and measured me and put it down to a straight-forward (no research) diagnosis: Marfan Syndrome.
I've had the chest pains, the thin looking arms, etc, etc for years and my father always thought the breathing part was Asthma although the breathing apparatus never actually helped at all. I recall having it as early as 8 years old but I'm now 33 and at least have a name and read up on it to discover I have all the symptoms that relate to it. Oddly my parent's show no sign of the disease, my uncle is tall and think so I guess there's some truth to it. Since January, I've been experiencing migraines and waking up with head-aches most mornings. I read up something in relation to those two being connected and I've had a fair few sick days off due to it. (About 17 in all I think from Jan to July). My supervisor has been on me about my days off due to my health as we are really only allowed 8 days off the year (understandable) - however, there's been a lot of staff over the 8 day limit, some even close to my times off (one being 14 days off during the year and another 16-17 days off). Most are 8-9 days... However, I feel like I'm being singled out due to it since no one else with the (high days) have been approached to my knowledge. Now, I've had my supervisor insist that I bring in a written letter by my doctor (who diagnosed me) to ""prove"" that I have the syndrome and I'm not "faking" it.. I've taken all the steps I know of with the doctor (had blood tests, cat scan even an MSI) to see if there's anything that could be causing the migraines (or even more on MFS) but they've all come back as normal. Posted on 07/07/09, 05:07 pm |
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Wolfecub,
Your Marfan and migraines could be independent of each other. However, the connective tissue molecules which Marfan makes defective appear just about everywhere in the body, and migraines typically involve the walls of blood vessels in the brain, which could be affected by Marfan. At the very least, the doctor who prescribes your migraine medication should take Marfan into account. 
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The doctor I'm seeing is the one who diagnosed me (thought it better to stay with one that actually is aware of the situation). Pity even though I'm comfortable with the doctor and know he understands the situation, work doesn't actually feel the same way.
Since I've been sick with days off due to the circumstances, I feel like I'm being interrogated by my workplace.
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Wolfecub,
Employers are strictly limited in what information they can demand from their employees about their medical conditions. If this persists, you may need competent legal advice. Employers may think that our current economic crisis gives them the upper hand, enabling them to flout the law with impunity. Don't allow that. Good luck.
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Now-a-days I'm really resenting coming into work. There's around 40 odd people working where I am (doing the same job for the most part), and a lot of them have had quite a few sick days. I was told that paid sick leave is capped at 8 days for the year. A lot of people are over 8 days, many are around 12-14 and close to what I've had off.
These people haven't been diagnoses with a sickness mind you (like Marfan's, just their sick). I think the only genuine one is swine flu off for the week. and that was last week. Work has approached me, pulled me to the side and obligated me to sign a contracted agreement that I will follow a guideline of rules they've established to (better) my attendance at work otherwise they are able to terminate my contract. Funny how I've been the only person approached on my work attendance (due to sickness) and none of the other staff have been approached or have been obligated to do these agreements. Part of that agreement to minimize migraines are to wear my glasses and take regular 5 minute misc breaks every hour. If I forget my glasses once, or miss a misc break, I'm likely to have disciplinary action taken on me which could also resort to termination of employment. I despise my job because I'm feeling singled out and its all due to my health.
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