Today, according to the Ponsetti Institute, is World Clubfoot Day - actually, it is Ponsetti's birthday, so there's the first clue. Not that I don't think there shouldn't be a celebration for us clubbies, but the problem is, it isn't - for all clubbies. It's for all the new clubbies, yes, all the young ones, those, specifically, still in the care of the pediatric medical community. And I think that's OK - as far as it goes.
The trouble is, it doesn't go far enough. Because for everyone past the age of pediatric care, well, you are pretty much on your own. Unless you think having one solution - fusions - is really a sign the medical community cares about you. I mean, go ahead, celebrate, but what, exactly, do adult and late-teen clubbies have to celebrate? We see the use of words like "corrected", and "cure" and "prevent." None of which are true, and all of which are designed to lull parents into complacency. The doctors want compliance, belief, trust. That's why they just can't bring themselves to tell parents the whole truth.
Even the Ponsetti community isn't hearing the truth. Just because you reconfigure the feet with little or no surgery still fails to address the other aspects of TEV - the distorted muscle cells of the lower leg, the fact that repositioning/reconfiguring does not guarantee fully optimal biomechanic alignment of the joint facets. And even by their own studies, at least 20% of those treated through the Ponsetti method fail to find long-term relief. If we also look seriously at the actual studies done by Ponsetti practitioners, they still haven't had anyone, at least not in any significant numbers, reach middle age and still report a pain-free life. So thanks, but I would rather wait for the real long-term studies before I start patting Ponsetti on the back.
Now, I am glad that the Ponsetti Institute is really trying to make a difference for the kids with CF. I am happy those kids have someone at least trying something different. But until they start dealing with the truth of the matter in a forthright way, I won't be sharing their party just yet.
And until the medical profession starts to take all of the rest of us clubbies seriously - do the real research, develop substantive solutions for those of us not so lucky to be born in the Ponsetti Era, seek good palliative treatments that don't start and stop with fusions - I will only be celebrating the day each clubby I know finds some small amount of relief from the daily grief of their damaged feet.
That's the only party I see worth celebrating right now.
The trouble is, it doesn't go far enough. Because for everyone past the age of pediatric care, well, you are pretty much on your own. Unless you think having one solution - fusions - is really a sign the medical community cares about you. I mean, go ahead, celebrate, but what, exactly, do adult and late-teen clubbies have to celebrate? We see the use of words like "corrected", and "cure" and "prevent." None of which are true, and all of which are designed to lull parents into complacency. The doctors want compliance, belief, trust. That's why they just can't bring themselves to tell parents the whole truth.
Even the Ponsetti community isn't hearing the truth. Just because you reconfigure the feet with little or no surgery still fails to address the other aspects of TEV - the distorted muscle cells of the lower leg, the fact that repositioning/reconfiguring does not guarantee fully optimal biomechanic alignment of the joint facets. And even by their own studies, at least 20% of those treated through the Ponsetti method fail to find long-term relief. If we also look seriously at the actual studies done by Ponsetti practitioners, they still haven't had anyone, at least not in any significant numbers, reach middle age and still report a pain-free life. So thanks, but I would rather wait for the real long-term studies before I start patting Ponsetti on the back.
Now, I am glad that the Ponsetti Institute is really trying to make a difference for the kids with CF. I am happy those kids have someone at least trying something different. But until they start dealing with the truth of the matter in a forthright way, I won't be sharing their party just yet.
And until the medical profession starts to take all of the rest of us clubbies seriously - do the real research, develop substantive solutions for those of us not so lucky to be born in the Ponsetti Era, seek good palliative treatments that don't start and stop with fusions - I will only be celebrating the day each clubby I know finds some small amount of relief from the daily grief of their damaged feet.
That's the only party I see worth celebrating right now.
I agree with you 100%!!!!
ReplyDeleteWell said...as always! :)
ReplyDeleteIn my opinion, while I think your realism is healthy - you might as well party for the kids that may walk better and be mindful your words - while they speak about your suffering don't depress unnecessarily and excessively those parents who need all the hope in the world that is available today for their children going through the treatment.
ReplyDeleteAlso: "And even by their own studies, at least 20% of those treated through the Ponsetti method fail to find long-term relief." ---
If you are going to make this statement that at least 1/5 Ponsetti treatments fail...pls include the reference to the study.
wishing you the best
If parents are depressed due to the truth of what may in fact be their childs future dealing with post-club feet, then they should be blaming the doctors for not being completely honest. As for the studies - ask the Ponsetti Institute to make them more available, but I do in fact cite them in other places in this blog. It happens to be a study done by Ponsetti practitioners in the US and India.
ReplyDeleteI am not concerned, by the way, with the parents as much as I am with those like myself who have to live with the aftermath of the poor research and treatment options.
The best to you, as well.
Hey NBWK..I think your correct, and I'm having wicked pain in my legs (yes I'm from Boston) are there any different surgeries besides fusion. I'm almost there to ahve this done because I can't take the pain anymore, but I'm afraid too. any thoughts Thanks and I'm so glad I'm not alone with this YEA FOR CLUBBY'S !!!!
ReplyDeleteMom of 4 in Ma
Hi, Mom!!
ReplyDeleteThe best thing I can suggest in the Boston area is to see Dr. Thomas Hardiman
116 Long Pond Rd
Plymouth, MA 02360
(508) 747-3567 (Office)
(508) 747-3567 (Fax)
He is an exemplary biomechanist, and before considering surgery, you should see what non-surgical approaches might help. Dr. Hardiman is one of the better docs on the east Coast for this, IMHO. (I had a small amount to do with his training :-) Tell him Mr. Bumbo recommended him to you.