Can a recast infusion affect EDS?

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?

Asking for my adult granddaughter: Is there an Ehlers Danlos Syndrome (EDS) specialist clinic at Mayo? Where? Would they be able to help develop a treatment plan that her local medical providers can follow, since few doctors or therapists know anything about EDS. In fact, most of the doctors during her discovery/diagnosis have been dismissive of the many “mysterious” symptoms. She has had genetic testing done to confirm the diagnosis now. Problems have involved of course joint dislocation and constant pain, gastrointestinal and gynecological challenges. All these frustration are affecting her mental health. Thank you.

Hello @annettam, you may find the following information helpful, https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/care-at-mayo-clinic/mac-20362179.

@JustinMcClanahan
Thank you we have seen this and looked into making an appointment.
I was rather disappointed when I called to inquire about an appointment in Jacksonville. They suggested that this would be primarily diagnostic and were not encouraging that she would be getting a plan to share with her providers near home. We had hoped that getting sort of a protocol from Mayo would be credible and actionable for opening communications with the doctors who are uncomfortable even seeing or treating her, challenging her pain complaints, and PT recommending inappropriate exercises.