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tstormes
@tstormes

Posts: 2
Joined: Jan 05, 2019

Diagnosed with Calciphylaxis

Posted by @tstormes, Sat, Jan 5 2:50pm

Hello everyone! I would like to start by saying, it is nice to find a place to ask questions about medical diagnosed.
My husband was diagnosed with Calciphylaxis in July, 2018. We made the trip from our home in Ohio to Florida, to the Mayo Clinic for an expert diagnosis. It was confirmed that he does have Calciphylaxis. I have researched this (not forgiving) disease since July. I have learned so much about it from many different studies and articles.
My husband and I are wondering if anyone else on here has or knows someone that has Calciphylaxis?
Thank you in advance for any information.

REPLY

Hello @tstormes, welcome to Connect. I would like to invite @bootsiediabeitc1 to this conversation as they previously talked about having a husband being diagnosed with calciphylaxis. You can see some of that conversation as well, here, https://connect.mayoclinic.org/discussion/seizures-and-calciphlaxes/.

@tstormes, while we wait for some more input, is there a particular question you would like to ask?

@JustinMcClanahan

Hello @tstormes, welcome to Connect. I would like to invite @bootsiediabeitc1 to this conversation as they previously talked about having a husband being diagnosed with calciphylaxis. You can see some of that conversation as well, here, https://connect.mayoclinic.org/discussion/seizures-and-calciphlaxes/.

@tstormes, while we wait for some more input, is there a particular question you would like to ask?

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@JustinMcClanahan , Thank you for your response, this disease is so complex with the way it progresses and the level of pain is beyond what I could even imagine. My husband has been on the Sodium Thiosulfate since August 2018, he receives this three times a week. The wound is on the left side of his abdominal/chest area, which is slowly getting larger.
I was hoping someone would have some information/treatments that has been tried, that I have not been able to find.

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