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Diagnosed with Calciphylaxis
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.
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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 , 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.
I am trying to help a friend who was dx’d with calciphylaxis in Dec 2023 here in NC. Our regional hospital does not seem to have much expertise with this disease. I am wondering if you have found support at Mayo and with Mayo Connect.
Welcome to Connect, @suzanne0622 Your friend is so lucky to have you looking out for them! Coming to Connect is a great place to get feedback from others who have the same diagnosis.
While you’re waiting for member’s to reply, I do have a link for your friend if they are interested in requesting an appointment at Mayo Clinic.
http://mayocl.in/1mtmR63
That link will take them to the main page. Follow the prompts for New Patient and then select a Mayo Campus. There is one in Jacksonville, FL which would probably be the nearest for your friend in NC.
Since Calciphylaxis is a fairly rare diagnosis it could be advantageous for your friend to seek care at a larger medical facility, or a teaching/research clinic such as Mayo.
Is your friend undergoing any type of treatment?
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1 ReactionMy friend underwent wound care at the VA in Dec. which I understand was not successful. Then was admitted to our regional hospital’s ER in early January for a serious infection in his lower leg. The hospital recommended amputation with post surgery rehab before returning home. Now the hospital is recommending longterm nursing home care or hospice admission! I am deeply concerned.