{"id":6227,"date":"2022-01-24T19:47:49","date_gmt":"2022-01-24T19:47:49","guid":{"rendered":"https:\/\/www.itsan.org\/us\/?p=6227"},"modified":"2025-08-14T14:22:40","modified_gmt":"2025-08-14T14:22:40","slug":"jem-and-jude-a-tsw-warrior-and-caregivers-story","status":"publish","type":"post","link":"https:\/\/www.itsan.org\/us\/2022\/01\/24\/jem-and-jude-a-tsw-warrior-and-caregivers-story\/","title":{"rendered":"JEM AND JUDE &#8211; A TSW WARRIOR AND CAREGIVER\u2019S STORY"},"content":{"rendered":"\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_three_fourth-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_three_fourth-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_three_fourth-15d750bd1b332b34c6e70b077ebbccdf av_three_fourth  avia-builder-el-0  el_before_av_one_fourth  avia-builder-el-first  first flex_column_div av-zero-column-padding  '     ><p>\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_heading-dd1bc3dadc665e31df96f4921491c4b0\">\n#top .av-special-heading.av-av_heading-dd1bc3dadc665e31df96f4921491c4b0{\npadding-bottom:10px;\n}\nbody .av-special-heading.av-av_heading-dd1bc3dadc665e31df96f4921491c4b0 .av-special-heading-tag .heading-char{\nfont-size:25px;\n}\n.av-special-heading.av-av_heading-dd1bc3dadc665e31df96f4921491c4b0 .av-subheading{\nfont-size:15px;\n}\n<\/style>\n<div  class='av-special-heading av-av_heading-dd1bc3dadc665e31df96f4921491c4b0 av-special-heading-h3  avia-builder-el-1  el_before_av_textblock  avia-builder-el-first '><h3 class='av-special-heading-tag'  itemprop=\"headline\"  >Jem and Jude &#8211; A TSW Warrior and Caregiver\u2019s Story<\/h3><div class=\"special-heading-border\"><div class=\"special-heading-inner-border\"><\/div><\/div><\/div><br \/>\n<section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><div id=\"bgLayers_comp-kybqdhr9\" class=\"_3wnIc\" data-hook=\"bgLayers\">\n<div id=\"bgMedia_comp-kybqdhr9\" class=\"_2GUhU\"><\/div>\n<\/div>\n<div class=\"\" data-mesh-id=\"comp-kybqdhr9inlineContent\" data-testid=\"inline-content\">\n<div data-mesh-id=\"comp-kybqdhr9inlineContent-gridContainer\" data-testid=\"mesh-container-content\">\n<div id=\"comp-kybqdhrg\" class=\"_2Hij5\" data-testid=\"richTextElement\">\n<p class=\"font_8\">I&#8217;m Jem and this story is to put on record the pain, turmoil, fight, hurt, anguish and the ultimate release from a misdiagnosed and mismanaged chronic skin condition. This is about 3 things:<\/p>\n<ul class=\"font_8\">\n<li>\n<p class=\"font_8\">Raising awareness of Topical Steroid Addiction (TSA) and subsequent withdrawal (TSW).<\/p>\n<\/li>\n<li>\n<p class=\"font_8\">The ripple effect on close family and the need for 24 hour care for many months.<\/p>\n<\/li>\n<li>\n<p class=\"font_8\">The every day battle associated with chronic eczema that is in fact TSA and TSW.<\/p>\n<\/li>\n<\/ul>\n<p class=\"font_8\">This is not intended to dwell on medical error or judgement.<\/p>\n<p class=\"font_8\">About Me<\/p>\n<p class=\"font_8\">I am 54, live in Ormskirk, Lancashire (UK)).\u00a0 My wife Jude and I have 4 children.\u00a0 I am a Professor of Medical Education but not a clinician. My background is in education.<\/p>\n<p class=\"font_8\">I do not, and I never have, talked about my chronic skin condition. To get through life I box it off. I set it apart from who I am so that I can function and achieve. Only Jude, my children and close family know the impact that it has on my life. However, there is only one person I discuss it with and that is Jude, and even then any discussion is on my terms. I have seen many dermatologists over several decades.\u00a0 I felt they never understood and made me feel I had no choice but to suppress the symptoms. No-one in the medical profession was prepared to try and find out why and treat the cause.<\/p>\n<p class=\"font_8\">My only way to cope was to shut down and develop coping mechanisms. There were many many times I didn&#8217;t cope but I would hide it. Only those at home who witnessed it knew.<\/p>\n<p class=\"font_8\">The physical and mental exhaustion I have endured is hard to put into words and my preference has been not to try.<\/p>\n<p class=\"font_8\">It was Jude who discovered TSW. She knew it would be a challenge to raise the topic with me. She had to research alone to really be sure that raising the topic was the right decision. She slowly drip fed me snippets of information. Sometimes through tears. The realisation she had come to I needed to figure out for myself but I needed nudging. Even once I came to the same conclusion I was stubborn and avoided all media content. It was always too painful. Jude developed relationships with key people. She talked to other warriors via Instagram and bought books. She was well informed. It took me so much courage to break down those barriers, listen, read and then slowly come to terms with how other peoples&#8217; journeys could help my own. I eventually watched bits of the videos, read sections of books and engaged with social media content. All on my own terms and in my own way. Without these I know I wouldn&#8217;t be where I am now.<\/p>\n<p class=\"font_8\">Jude posted this below on an online TSW support group towards the end of my second month of not using topical steroids:<\/p>\n<p class=\"font_8\"><em>I am supporting my husband through TSW. I just want to thank you for this group.<\/em><\/p>\n<p class=\"font_8\"><em>I stumbled across TSW on Instagram. I was looking at some reels and saw someone with extremely bad skin. It caught my eye as it looked like my husband. I had never seen anyone with skin like his. My husband is 54 and he was \u00a0diagnosed with chronic eczema at aged 15. His life has been dominated by his extensively flaring skin. We have been together 30 years and I have seen him suffer so much. I watched Dr Heba Khaled&#8217;s PowerPoint and I cried. My husband had textbook symptoms for TSW. I don&#8217;t think he has ever had eczema but has always been in some state of TSW. He never had eczema as an infant but had a severe skin reaction to a hayfever injection in 1980s. Since then he has been treated with every type of potent steroid (topical, oral and injection). He has resisted immunosuppressants but steroids have been on repeat prescription for 40 years. He is now on day 51 of no steroids. I don&#8217;t need to tell you what that means! Although now is hell, for the first time he (we) can see hope. I am so grateful for everyone who has shared their journey on social media. We would never have found TSW if you hadn&#8217;t. This group is such a support. Thank you xx<\/em><\/p>\n<p class=\"font_8\">Acknowledgements<\/p>\n<p class=\"font_8\">I was unable to seek direct advice and support.\u00a0 It was just too difficult and painful.\u00a0 Jude searched and contacted those who had written and published about their experiences of going through TSW.\u00a0 We will be forever grateful.<\/p>\n<p class=\"font_8\">Cara Ward<br \/>\nInstagram: <a href=\"https:\/\/www.instagram.com\/carasnextchapter\/?hl=en\" target=\"_self\" rel=\"noreferrer noopener\">carasnextchapter<\/a><\/p>\n<p>Book: Curing my Incurable Eczema Paperback (2017)<\/p>\n<p class=\"font_8\">Dr Heba Khaled<br \/>\nInstagram: <a href=\"https:\/\/www.instagram.com\/tsw_atlas\/?hl=en\" target=\"_self\" rel=\"noreferrer noopener\">tsw_atlas<\/a><\/p>\n<p>Youtube:\u00a0 An Overview of TSW<\/p>\n<p class=\"font_8\"><a href=\"https:\/\/www.youtube.com\/watch?v=x4ypA9w81f0\" target=\"_self\" rel=\"noreferrer noopener\">https:\/\/www.youtube.com\/watch?v=x4ypA9w81f0<\/a><\/p>\n<p class=\"font_8\">Dr Ruth GP\u00a0\u00a0Instagram:\u00a0<a href=\"https:\/\/www.instagram.com\/drruthskinjourney\/?hl=en\" target=\"_self\" rel=\"noreferrer noopener\">drruthskinjourney<\/a><\/p>\n<p class=\"font_8\">Claire TSW\u00a0 Instagram:\u00a0<a href=\"https:\/\/www.instagram.com\/theendlessitch\/?hl=en\" target=\"_self\" rel=\"noreferrer noopener\">theendlessitch<\/a><\/p>\n<p class=\"font_8\">A US doctor has been a key reference point throughout:<\/p>\n<p class=\"font_8\">Marvin J. Rapaport, M.D.<\/p>\n<p class=\"font_8\">Youtube: Interview with Dr Rapaport &#8211; Topical Steroid Addiction\/Topical Steroid Withdrawal<\/p>\n<p class=\"font_8\"><a href=\"https:\/\/www.youtube.com\/watch?v=0JNVj6eAHDs\" target=\"_self\" rel=\"noreferrer noopener\">https:\/\/www.youtube.com\/watch?v=0JNVj6eAHDs<\/a><\/p>\n<p class=\"font_8\">Another\u00a0key\u00a0reference point:\u00a0 TSW Syndrome Support web pages:\u00a0<a href=\"https:\/\/www.itsan.org\/us\/\" target=\"_self\" rel=\"noreferrer noopener\">ITSAN<\/a><\/p>\n<p class=\"font_8\">My first blog is below. \u00a0I will be adding to this over time as I continue to recover from TSA. Thank you,<\/p>\n<p class=\"font_8\">Jem<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div><\/section><br \/>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_image-380c0bedc58c1c65bd7d4281a69c2d87\">\n.avia-image-container.av-av_image-380c0bedc58c1c65bd7d4281a69c2d87 img.avia_image{\nbox-shadow:none;\n}\n.avia-image-container.av-av_image-380c0bedc58c1c65bd7d4281a69c2d87 .av-image-caption-overlay-center{\ncolor:#ffffff;\n}\n<\/style>\n<div  class='avia-image-container av-av_image-380c0bedc58c1c65bd7d4281a69c2d87 av-styling- avia-align-left  avia-builder-el-3  el_after_av_textblock  el_before_av_hr '   itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" ><div class=\"avia-image-container-inner\"><div class=\"avia-image-overlay-wrap\"><img decoding=\"async\" class='wp-image-6236 avia-img-lazy-loading-not-6236 avia_image ' src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/01\/hand2-1.jpg\" alt='' title='hand2'  height=\"186\" width=\"340\"  itemprop=\"thumbnailUrl\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/01\/hand2-1.jpg 340w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/01\/hand2-1-300x164.jpg 300w\" sizes=\"(max-width: 340px) 100vw, 340px\" \/><\/div><\/div><\/div><br \/>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_hr-fbebcb4fe7f7f93a621d8b6783460008\">\n#top .hr.hr-invisible.av-av_hr-fbebcb4fe7f7f93a621d8b6783460008{\nheight:30px;\n}\n<\/style>\n<div  class='hr av-av_hr-fbebcb4fe7f7f93a621d8b6783460008 hr-invisible  avia-builder-el-4  el_after_av_image  el_before_av_heading '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div><br \/>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_heading-d768058e92958c8a6e02cb8c19dca64f\">\n#top .av-special-heading.av-av_heading-d768058e92958c8a6e02cb8c19dca64f{\npadding-bottom:10px;\n}\nbody .av-special-heading.av-av_heading-d768058e92958c8a6e02cb8c19dca64f .av-special-heading-tag .heading-char{\nfont-size:25px;\n}\n.av-special-heading.av-av_heading-d768058e92958c8a6e02cb8c19dca64f .av-subheading{\nfont-size:15px;\n}\n<\/style>\n<div  class='av-special-heading av-av_heading-d768058e92958c8a6e02cb8c19dca64f av-special-heading-h3  avia-builder-el-5  el_after_av_hr  el_before_av_textblock '><h3 class='av-special-heading-tag'  itemprop=\"headline\"  >How did I not know? The revelation of Topical Steroid Addiction (TSA) and Withdrawal (TSW) <\/h3><div class=\"special-heading-border\"><div class=\"special-heading-inner-border\"><\/div><\/div><\/div><br \/>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_textblock-352afc35c842fc84891e91dfc27c56b5\">\n#top .av_textblock_section.av-av_textblock-352afc35c842fc84891e91dfc27c56b5 .avia_textblock{\nfont-size:18px;\n}\n<\/style>\n<section  class='av_textblock_section av-av_textblock-352afc35c842fc84891e91dfc27c56b5 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>A Photographic Diary<\/strong><\/p>\n<\/div><\/section><br \/>\n<div  class='avia-button-wrap av-av_button-56e159ede60e7b276f1471d1d8b62944-wrap avia-button-left  avia-builder-el-7  el_after_av_textblock  el_before_av_hr '><a href='https:\/\/jembrown7.wixsite.com\/top-steroid-withdraw\/post\/stopping-using-topical-steroids-from-august-to-december-2021-a-photographic-diary' class='avia-button av-av_button-56e159ede60e7b276f1471d1d8b62944 avia-icon_select-yes-left-icon avia-size-medium avia-position-left avia-color-theme-color' target=\"_blank\" rel=\"noopener noreferrer\"><span class='avia_button_icon avia_button_icon_left' aria-hidden='true' data-av_icon='\ue803' data-av_iconfont='entypo-fontello'><\/span><span class='avia_iconbox_title' >Click to View<\/span><\/a><\/div><br \/>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_hr-616cd310f4c6bf63bbd1f033802c1165\">\n#top .hr.hr-invisible.av-av_hr-616cd310f4c6bf63bbd1f033802c1165{\nheight:20px;\n}\n<\/style>\n<div  class='hr av-av_hr-616cd310f4c6bf63bbd1f033802c1165 hr-invisible  avia-builder-el-8  el_after_av_button  el_before_av_textblock '><span class='hr-inner '><span class=\"hr-inner-style\"><\/span><\/span><\/div><br \/>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_textblock-352afc35c842fc84891e91dfc27c56b5\">\n#top .av_textblock_section.av-av_textblock-352afc35c842fc84891e91dfc27c56b5 .avia_textblock{\nfont-size:18px;\n}\n<\/style>\n<section  class='av_textblock_section av-av_textblock-352afc35c842fc84891e91dfc27c56b5 '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>Supporting Dad (Reflections after 6 months of TSW)<\/strong><\/p>\n<p><span style=\"font-weight: 400;\">\u201cAs I pass the milestone of 6 months into TSW I wanted to write about my family <\/span><span style=\"font-weight: 400;\">\u00a0support&#8230;They explain far better than I could the impact TSW has on my close family.\u201d <\/span><span style=\"font-weight: 400;\">-Jude<\/span><\/p>\n<\/div><\/section><br \/>\n<div  class='avia-button-wrap av-av_button-829b65f0b7dde00557dbd599a4023ba7-wrap avia-button-left  avia-builder-el-10  el_after_av_textblock  avia-builder-el-last '><a href='https:\/\/jembrown7.wixsite.com\/top-steroid-withdraw\/post\/supporting-dad-reflections-as-i-reach-6-months-of-tsw' class='avia-button av-av_button-829b65f0b7dde00557dbd599a4023ba7 avia-icon_select-yes-left-icon avia-size-medium avia-position-left avia-color-theme-color' target=\"_blank\" rel=\"noopener noreferrer\"><span class='avia_button_icon avia_button_icon_left' aria-hidden='true' data-av_icon='\ue803' data-av_iconfont='entypo-fontello'><\/span><span class='avia_iconbox_title' >Click to View<\/span><\/a><\/div><\/p><\/div>\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_fourth-c8fc129dc35fd1ae2a1e410224d39ea8\">\n.flex_column.av-av_one_fourth-c8fc129dc35fd1ae2a1e410224d39ea8{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_fourth-c8fc129dc35fd1ae2a1e410224d39ea8 av_one_fourth  avia-builder-el-11  el_after_av_three_fourth  avia-builder-el-last  flex_column_div av-zero-column-padding  '     ><style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_image-fffcffbc08f9efd7c0af4ef035efcc87\">\n.avia-image-container.av-av_image-fffcffbc08f9efd7c0af4ef035efcc87 img.avia_image{\nbox-shadow:none;\n}\n.avia-image-container.av-av_image-fffcffbc08f9efd7c0af4ef035efcc87 .av-image-caption-overlay-center{\ncolor:#ffffff;\n}\n<\/style>\n<div  class='avia-image-container av-av_image-fffcffbc08f9efd7c0af4ef035efcc87 av-styling- avia-align-center  avia-builder-el-12  avia-builder-el-no-sibling '   itemprop=\"image\" itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/ImageObject\" ><div class=\"avia-image-container-inner\"><div class=\"avia-image-overlay-wrap\"><img decoding=\"async\" class='wp-image-6228 avia-img-lazy-loading-not-6228 avia_image ' src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2022\/01\/main.jpg\" alt='' title=''  height=\"255\" width=\"300\"  itemprop=\"thumbnailUrl\"  \/><\/div><\/div><\/div><\/div><\/p>\n","protected":false},"excerpt":{"rendered":"<p>A Professor of Medical Education shares a photographic journal of his Topical Steroid Addiction and Topical Steroid Withdrawal experience.<\/p>\n","protected":false},"author":1,"featured_media":6228,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-6227","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"_links":{"self":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/6227","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/comments?post=6227"}],"version-history":[{"count":11,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/6227\/revisions"}],"predecessor-version":[{"id":9944,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/6227\/revisions\/9944"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media\/6228"}],"wp:attachment":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media?parent=6227"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/categories?post=6227"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/tags?post=6227"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}