Recently I got an e-mail from a fellow Ledderhose patient in America. She was diagnosed 4 months ago and she had lots to say that I am going to quote and comment on, firstly:
"I have learned more from your blog in one evening then I have learned in the last four months of multiple consultations with podiatrists and other medical professionals. I have met with doctors here in Florida, as well as in Washington, DC."
On the positive side of things my blog was very helpful and importantly it was found and I was successfully contacted which are all crucial things to the blog and helping Ledderhose patients. On the negative side of things how is it that a 25 year old guy has managed to collect and explain more information that these medical professionals? I mean the least they could do is look the blog up (or medical resources) themselves before the patient visits and then they'd know a bit more of what they are talking about. It was also clear to see her frustration from several of the following comments.
"I am just now coming to realize how rare this condition is, which helps to explain why it has received so little attention. I have checked the web sites of several world renowned medical centers who maintain lists of hundreds of diseases, but LD doesn't even rate a mention."
"In the meantime, I have been desperately trying to cobble together a treatment plan despite the lack of clear information. The first podiatrist I met with immediately presented surgery as the only treatment option and downplayed the risks. Another told me he knew of no effective treatments and that I should consider surgery only as a last resort. Yet another podiatrist told me that one should NEVER have surgery and that the condition could be managed. BTW, all of the podiatrists I have met with are experienced, board certified and educated at leading podiatry schools in the U.S."
She then went on to discuss some other things that I don't think it is right for me to share. But this goes to show that there are people out there reading the blog, there are people out there who are learning from the blog and that perhaps together we can make a difference. Certainly receiving the e-mail made my day when I saw the concluding remark...
"Thank you for all your good work, Gary. You are making a difference."
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