Can a recast infusion affect EDS?
I have EDS (Elhers Danlos Syndrome) and recently received my first infusion of Reclast. I am 73 years old, white, and very petite. Can Reclast affect patients with EDS more severely than those who do not have it?
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I would be really interested in an answer to this question, too. It is amazing in how many ways, my finally diagnosed hEDS, affects, my other medical conditions and treatments. And there seems to be a lack of knowledge and concern by my doctors, regarding this situation.
It is so disappointing that the medical profession is woefully ignorant about this condition! In the past 10 years I have seen a slight increase in awareness, but still not much genuine understanding or depth of knowledge. I wish there some way to get the information out to doctors and other medical professionals across the board.
Is there any way to wake them up?
My sister in law was diagnosed with Multiple Myeloma about 10 years ago. At that time there was barely any information readily available, at least for public consumption. That situation has evolved thank goodness, but it seems that EDS hasn't really emerged in the public arena. With the various levels of professionals, even when there is some awareness, it is just a slight recognition of something to do with hyper-mobility, but nothing deeper than that!
Yes, your last sentence sums it up! I have to constantly re- educate my PCP, AND dentist regarding how my hEDS effects me, and how their suggestions won't work for me.
How deep into it do you go?