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Does anyone know of anyone having heart related issues with this skin disorder?
Does anyone know of anyone having heart related issues with this skin disorder?
Welcome,
I'm sure Lex can give a better overall answer for that, but I know with each case there seems to be unique issues. I can only answer this one in saying in our case the heart is about the only organ "Not" effected in some way. We do deal with pulmanary ones and blood clots though. Maybe be a little more specific such as valves, enlarged, or leaking. Is there any additional syndromes present with the CMTC?
Ed
Dear Tres,
Indeed, as Ed states: almost each CMTC case is unique. Last weekend we've had our annual CMTC meeting in the NL (a member from the USA joined as well) and during that meeting a number of very interesting questions have been answered. I've summarised these and this summary is currently being reviewed by one of our medical advisors. The answers and questions will be present in the CMTC newsletter (for members and doctors only).
I'm also working on a list of questions (FAQ's) which will be published on our website in the near future. However, this requires quite some review time.
In case of CMTC markings on the trunk or buttocks you need to take a look first by ultrasound at the organs. In case of any deviations you should go for a MRI or MRA (= MRI with contrast fluid to show the veins). Special attention needs to be paid to liver, kidnies and heart for instance.
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