Pemphigus Foliaceus

Posted by mylan @mylan, Nov 19 3:48pm

I have been diagnosed with a rare Autoimmune Disorder by the name of Pemphigus Foliaceus. Does anyone have any experience with this disorder and have any tips for me medically or nutritionally and/or want to share your experience with me?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

pb50 Pam | @pb50 | Nov 19 4:02pm

Sorry I am not familiar with it.

Becky, Volunteer Mentor | @becsbuddy | Nov 19 10:24pm

@mylan Welcome to Mayo Clinic Connect. I’m glad you found us. I, too, have not heard of this autoimmune disease before so i included what Mayo Clinic says about it.
https://www.mayoclinic.org/diseases-conditions/pemphigus/symptoms-causes/syc-20350404
Let’s hope some members are familiar with this and will join the conversation.
Are you currently under treatment for this pemphigus foliaceus?

mylan | @mylan | Nov 20 9:00am

This autoimmune disorder is so rare that only 1-5 of one million people acquire it….. it’s the kind of special you don’t want to be.

Yes…. I was diagnosed and treated by a small town dermatologist for close to a year. My condition has gotten progressively worse so they referred me to a Dermatologist represented by KU Medical Center of Olathe KS. I am sitting in the waiting room waiting to be seen as we speak.

Becky, Volunteer Mentor | @becsbuddy | Nov 20 1:04pm

In reply to @mylan "This autoimmune disorder is so rare that only 1-5 of one million people acquire it….. it’s..." + (show)

@mylan I’m so glad that you were sent to a specialist! Will you let me know everything you learn?

pb50 Pam | @pb50 | Nov 20 3:26pm

Wow – not the lottery you want to win! Autoimmune conditions are mysterious and frustrating –
Not to mention illusive and painful. But academically I look forward to learning what you learned.

Pam