So 2013 delivered a huge hunk of bad news. Someone very close to me was diagnosed with a rare collagen disorder, vascular Ehlers Danlos Syndrome. This young child has 14% collagen in his body compared to the 100% the rest of us has. His skin tears easily, he bruises easily, his future includes yearly echos, CTA flash scans every 3 years to look for aneurysms, heart medication daily to keep his blood pressure low, no contact sports or any exertion, no roller coasters, no surgeries that are not life saving…and the list goes on. The average life expectancy is 48 yrs but some pass much sooner as their skin, blood vessels, and hollow organs have the consistency of wet toliet paper and can tear easily.
There are some amazing doctors and scientists who have recently found some potential treatments to strengthen their collagen and there are some amazing potential cures as well. But they need donations to pay the scientists to work on this. It is a rare cause, but if they have financial support, they can save thousands of lives now. If you would like to help find a cure, please follow the link below and make a donation. Thank you.