Over the past 7 years we have numerous discussions with patients, parents and other family members about their journeys with Clubfoot. It is not an easy condition to deal with. It is tough, tougher than many can think of or know about. Like in any other condition there are always those mild cases who do not experience the same as those who have more symptoms and problems down the road. Understanding is sometimes lacking even between people dealing with the same condition as was evident in our journey.
We have had numerous people who discovered over time that the treatment they thought will fix everything, did not address or change most of the problems they found or deal with later on. Usually this is a huge disappointment, an eye opener, and people deal with a lot of feelings of guilt, grief even. Naturally, they are outraged if information was withheld or deliberately delayed. Symptoms they reported were ignored or diminished and their requests for further testing brushed off or denied.
For patients like these, there is no easy fix, no words that can make it better. One mother living way south in Texas discovered years down the line that her son had an underlying condition that is making treatment unsuccessful. They have had numerous procedures and castings and braces and it all failed at 8 years old.
The problem was that they were never told in the beginning that Ehlers Danlos Syndrome played a role. They trusted that doctors know better, but now regret that period of blind faith so to speak. They have no more surgical options left for the future. Everything that could be done has been done, plus it failed to correct the feet. The underlying condition was never mentioned, never addressed with them.
Some folks discover a tethered spinal cord in their 30's and 40's. Some are diagnosed with Spina Bifida as adults and to them it comes as a huge shock!. They cannot believe that they lived with the condition for years and no one every told them anything! It is a sad thing that so little is know about so many conditions still....