{"id":127,"date":"2005-05-20T17:20:36","date_gmt":"2005-05-20T15:20:36","guid":{"rendered":"http:\/\/ebagroup.web-log.nl\/ebagroup\/2005\/05\/about_jetty_.html"},"modified":"2015-07-06T12:05:19","modified_gmt":"2015-07-06T10:05:19","slug":"about-jetty","status":"publish","type":"post","link":"http:\/\/www.hmblankestijn.nl\/ebagroup\/about-jetty\/","title":{"rendered":"About Jetty .."},"content":{"rendered":"<p><em>Most people who read this log, till now, were family and friends, but I hope there will come more, especially other EBAers.<br \/>\nTherefor I will introduce myself &#8230;<br \/>\nMy name is Jetty, I am 49 years old, mother of two children. A son Bobby (23 years old) and a daughter Babette (18 years old). I live in the Netherlands together with Theo (my love) and Babette.<br \/>\nI have EBA since 1990, the first years they called it parapemphygus. In 1994 the diagnose EBA came.<br \/>\nThe blisters were at first only in my mouth, then after a couple of months my hands were full of blisters and wounds. But it was not for long un till my whole body was with blisters. My mouth, hands, knuckles, elbows, knees, ankles and feet. I had cyclosporine for a while but my body seemed not to react. I had antibiotics for a year or 2, with that I was out of the inflammation but the EBA remained&#8230;<br \/>\nIn 1997 I was diagnosed with cancer. The type of cancer is paraprot\u00ebinemie and I had a tumor (plasmacytoom) near my spinal cord. I had radiotherapy. The doctors were curious if my skin would react to the therapy. But it didn&#8217;t react at all. Al least that is what we thought. But after a while my EBA was gone (at least we thought). For a while I was without blisters and wounds. But they came back. The blisters destroyed the nails of my toes. And already one of my thumb nails.<\/em><\/p>\n<p>At first I thought that the EBA was a reaction of a stressful life. (I was married with an alcoholic and was abused by him, had two children who were stillborn, was sick a lot and so on &#8230;&#8230;<\/p>\n<p>Now I accept that my life is filled with blisters. I&#8217;m looking for other people with EBA (I never thought it would be so hard to find the other &#8220;happy few&#8221;) I would like to talk to them how there treatment is. What they do with there feet when they hurt to much to walk. Do you remove the milia or not? Things like that.<br \/>\nIf there are doctors who read this log I will asked them &#8220;do you have the miracle cure for EBA?&#8221; If there are manufacturers I will ask them &#8220;do you have any garments for people with EBA that is soft enough for our skins&#8221;<\/p>\n<p>Please react &#8230;&#8230;&#8230;&#8230;&#8230;&#8230;&#8230;&#8230;&#8230;&#8230;<\/p>\n<p>mei 2005<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Most people who read this log, till now, were family and friends, but I hope there will come more, especially other EBAers. Therefor I will introduce myself &#8230; My name is Jetty, I am 49 years old, mother of two children. A son Bobby (23 years old) and a daughter Babette (18 years old). I [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[1],"tags":[],"_links":{"self":[{"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/posts\/127"}],"collection":[{"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/comments?post=127"}],"version-history":[{"count":2,"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/posts\/127\/revisions"}],"predecessor-version":[{"id":483,"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/posts\/127\/revisions\/483"}],"wp:attachment":[{"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/media?parent=127"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/categories?post=127"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.hmblankestijn.nl\/ebagroup\/wp-json\/wp\/v2\/tags?post=127"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}