Here are some links to places where you can buy things to make Marfan life easier. You can fill in the form below to suggest places and items that you have found useful, and I may add them to this page.
Please note that just because I am listing these links, it does not mean I endorse any of the companies or the products. I will, of course, not list anything I know to be bad, but I can't check everything out.
MedicAlert
You can buy a bracelet or pendant to inform emergency workers of your health
condition. Mine says "Marfan Syndrome. At risk of aoric dissection or rupture. On meds."
Watches - I take Verapamil (a calcium channel blocker) four times a day. (I have found that the "long-acting" aka "time-release" isn't long-acting enough for me as either my absorption isn't as good as the participants in the pharmaceutical study groups, or my metabolism is higher. Rather than overlap doses of long-acting pills, I choose to take the regular (and non-dyed!) 80mg. pills four times a day. In order to remember to take them, I found a watch with a "count-down repeat" alarm. I set it for six hours, starting at 6:00 a.m., and it beeps every six hours, reminding me to take a pill. It may be difficult to find a nice-looking watch with "count-down repeat" alarm, but that feature is what you need to ask for. My watch is a Casio brand.
Video: The Heart of the Matter This 20-minute video is appropriate for people who are newly diagnosed with Marfan, people who suspect they may have the disorder, or by anyone generally interested in the disorder. (Please consider buying one to donate one to your public library. This will help explain to more people what the Marfan syndrome is all about!)
DVD: Gattaca This science-fiction feature film starring Ethan Hawke and Uma Thurman is an excellent movie (in my opinion) for people with the Marfan syndrome and other genetic disorders to see. Please see reviews at the link to learn above to learn more about the plot. In the special scenes on the DVD, under "Lost scenes," the scene "Coda" mentions Abraham Lincoln and the Marfan syndrome.
Small, Tall, & All Custom Embroidery, More Sizes - Can sew your logo on shirts, caps, and jackets in a wide range of sizes (including big & tall sizes).
Bras - Women with pectus excavatum or carinatum may have a hard time finding a comfortable bra. A suggestion was made that sports bras are quite comfortable alternatives to the traditional bra that may cut into the flesh of the chest.
I've learned through trial and error that sports bras aren't all that flattering. But I was able to find some bras that were comfortable -- after trying on maybe twenty different styles. My advice is to keep on trying different styles, no matter how long it takes and no matter how frustrating! Surely something out there is bound to be okay enough to wear for hours at a time.
