- CASE FILE
Auto immune disease that grows skin every two days and encompasses the use of hands ands feet as well as loss of external temperate HELP US
ABOUT THIS CASE FILE
In February 2018 my husband thought he had dandruff but it is more then that. He was diagnosed with a rare auto immune disease that seems to have no cure. They call it Pityriasis Rhubarb Polaris. It is a rare skin disease that makes skin every two to three days. His skin is red and blotchy and grows so fast it is uncontrollable. His skin grows and falls off every two days. His skin grows so fast on his feet and hands that it encompasses his whole hands and feet that he can not even use them. He has to wear gloves at all times to be able to keep them moist and be able to use them for daily activity. He can not be in the sun as his body can not regulate the heat. He no longer can tell if it is hot or cold and can get overheated with knowing it. He has become depressed and withdrawn and for a 51 year old does not wanted to participate in outside functions. The doctors say it is s disease only 1% of the population has and there is no specific cure. He has been given methotrexate, acitretin and now he has started Stelara. Stelara is not covered by our insurance and they believe it can help. They are giving us four “free” doses but we are not even sure that will help. This has Emma Ted our life so much he is embarrassed to go to our children’s events because people stare and ask stupid questions. He can not go outside and interact with our kids because he can get overheated, skin and flares up his skin. My husband is 51 and we have two children 17 & 15. We need help so that we can try and function outside of our home.