Heidi Ramos

I have Pityriasis Rubra Pilaris  (PRP).  It started around 1210/2017 and has been getting worse ever since.  It is rare skin disorder, causing my skin to blister and peel off my body from my head to my feet.  It is painful; limits my ability to walk and see; regulate my body temperature;  and makes me vulnerable to other infections.


I mention the above just to explain my current condition. I know I am fortune that is curable, even if it takes months or years. I am also lucky to have the most supprtive and loving spouse taking care of me. He has to help me with the most basic activites.  I am also lucky to have the assistance, support and caring of my closest friend, Jill Baker.  It was her insistence and physical drive that led to a correct medical diagnosis and treatment. I thank all the people at SIU, my family and friends for their support.


Some of my future entries may be written by Joel.  He has responded to most of my texts and phone calls because of my limited vision.  I created this site to make this chore easier for him.