{"id":280336,"date":"2025-07-28T09:25:10","date_gmt":"2025-07-28T13:25:10","guid":{"rendered":"https:\/\/rarediseases.org\/?p=280336"},"modified":"2025-12-02T15:53:41","modified_gmt":"2025-12-02T20:53:41","slug":"raising-awareness-of-gpp-jimmys-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/raising-awareness-of-gpp-jimmys-story\/","title":{"rendered":"Raising Awareness of GPP: Jimmy\u2019s Story"},"content":{"rendered":"<p style=\"text-align: center;\" data-prosemirror-content-type=\"node\" data-prosemirror-node-name=\"paragraph\" data-prosemirror-node-block=\"true\" data-pm-slice=\"1 1 []\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-medium wp-image-280421\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/07\/Psoriasislogo-300x120.png\" alt=\"\" width=\"300\" height=\"120\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/07\/Psoriasislogo-300x120.png 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2025\/07\/Psoriasislogo.png 498w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/p>\n<p style=\"text-align: center;\" data-prosemirror-content-type=\"node\" data-prosemirror-node-name=\"paragraph\" data-prosemirror-node-block=\"true\" data-pm-slice=\"1 1 []\"><em data-prosemirror-content-type=\"mark\" data-prosemirror-mark-name=\"em\">In honor of Generalized Pustular Psoriasis (GPP) Awareness Day, coming up on Aug. 13, this NORD guest blog from the National Psoriasis Foundation details one man\u2019s story to find a path forward.<\/em><\/p>\n<p style=\"text-align: center;\" data-prosemirror-content-type=\"node\" data-prosemirror-node-name=\"paragraph\" data-prosemirror-node-block=\"true\" data-pm-slice=\"1 1 []\">July 28, 2025<\/p>\n<p style=\"text-align: left;\" data-prosemirror-content-type=\"node\" data-prosemirror-node-name=\"paragraph\" data-prosemirror-node-block=\"true\" data-pm-slice=\"1 1 []\"><strong>Jimmy Castillo thought his toughest times happened when he was 15 years old.<\/strong> He was diagnosed with plaque psoriasis, and the visible nature of the disease immediately took its toll. He wore long sleeves or found creative ways to cover his skin, no matter how uncomfortable that might have been.<\/p>\n<p>Castillo describes himself as an outgoing person, and with effective treatments, he was able to get past the isolation and back out into the world. One couldn\u2019t blame Castillo for thinking the worst of it might be over.<\/p>\n<p>About five years ago, at the height of the COVID-19 pandemic, psoriatic disease dealt Castillo another unexpected and incredibly painful blow. It was more than a sucker punch. It blew his world apart. \u00a0\u201cI noticed something different,\u201d he explains. \u201cIt was different than what I was used to as a teenager. I struggled with my dermatologist because he kept putting me on steroid creams and treating it like it was [plaque] psoriasis.\u201d<\/p>\n<p>Though Castillo didn\u2019t know it yet, he had developed\u00a0<a href=\"https:\/\/rarediseases.org\/rare-diseases\/generalized-pustular-psoriasis\/\" target=\"_blank\" rel=\"noopener\">generalized pustular psoriasis<\/a> (GPP), an incredibly painful and very rare form of psoriasis. Like all forms of psoriasis, GPP is not contagious, but unlike the more common types of psoriasis, like plaque or inverse, GPP was, and still is, unknown or unrecognized even by skilled and experienced dermatologists.<\/p>\n<p>\u201cI went to my dermatologist and told them I had this rash,\u201d Castillo says. He explained that he could see that it was different from his plaque psoriasis, but his dermatologist didn\u2019t recognize the trademark pustules associated with the presentation of GPP on the skin. \u201cThey told me it was part of my psoriasis. It felt different, and I really struggled.\u201d<\/p>\n<p>That\u2019s when Castillo began his slow regression back to covering his skin and seeking isolation. \u201cIt brought back those difficult days when I had plaque psoriasis all over my body,\u201d he says. \u201cIt created a social barrier for me. I was in a relationship and GPP affected that relationship. It was really awkward.\u201d<\/p>\n<p>The pain of GPP can be debilitatingly severe. For Castillo, the visible aspects also made everyday life nearly impossible. \u201cIt was in very noticeable areas, so it created \u2013 for me, I call it the dark days,\u201d he explains. \u201cHaving it on my hands and using my hands to pay or to eat \u2013 everybody noticed. I became very shy, and I didn\u2019t want to go out. When I did go out, I used to wear gloves with fingertips cut out.\u201d<\/p>\n<h3><strong>It Felt Different<\/strong><\/h3>\n<p>Through all the uncertainty as Castillo searched for a diagnosis, he couldn\u2019t shake the feeling that this was not plaque psoriasis. \u201cThe pain was different,\u201d he says. \u201cThe feeling was different.\u201d<\/p>\n<p>Castillo could easily describe the difference, but that didn\u2019t help him get to an accurate diagnosis. \u201cIt was more like a rash. It was mostly pustular, little circles with a white tip on them,\u201d he shares. \u201cIt felt pointy and dry versus scaly and dry. It was more painful. I tried to get the puss out and that was incredibly uncomfortable.\u201d<\/p>\n<p>In a merciful twist of fate, Castillo found a dermatologist who conducted what he describes as a skin test, and that person was able to make the rare diagnosis of GPP. With the right diagnosis finally in place, Castillo and his health care provider found an effective systemic treatment that keeps the worst of GPP at bay. \u201cWhen I finally got on a biologic, it helped a lot,\u201d Castillo says. \u201cWith the relief of the medicine, I\u2019m able to live a normal life.\u201d<\/p>\n<p>Like psoriasis, GPP is chronic. Though in some cases it can appear and then not reappear again, in Castillo\u2019s case, GPP still shows up. Luckily, his treatment keeps things manageable. \u201cI do have occasions during the winter when GPP comes back or when plaque psoriasis comes back, but I\u2019m more aware now of how to treat it. When I do get a flare-up, I know how to control it better and move forward.\u201d<\/p>\n<h3 id=\"raising-gpp-awareness\"><strong>Raising GPP Awareness<\/strong><\/h3>\n<p>Tragically, stories like Jimmy Castillo\u2019s are not uncommon. Even though GPP is rare, it affects people in profoundly negative ways. And as with Castillo\u2019s case, even trusted dermatologists can miss this form of psoriasis. On August 13, the National Psoriasis Foundation (NPF) will recognize <a href=\"https:\/\/www.psoriasis.org\/gpp-toolkit\/\" target=\"_blank\" rel=\"noopener nofollow\">GPP Awareness Day<\/a>. This is the first in what will be an annual reminder to others that GPP is painful and isolating, and that people with GPP need support. It\u2019s also a call to health care providers to learn more about identifying and treating GPP, so that difficult journeys like Castillo\u2019s are less common.<\/p>\n<p data-prosemirror-content-type=\"node\" data-prosemirror-node-name=\"paragraph\" data-prosemirror-node-block=\"true\"><strong><em data-prosemirror-content-type=\"mark\" data-prosemirror-mark-name=\"em\">To learn more about GPP as well as how you can participate in GPP Awareness Day, please visit the National Psoriasis Foundation\u2019s <\/em><a href=\"https:\/\/www.psoriasis.org\/gpp-resource-center\/\" target=\"_blank\" rel=\"noopener nofollow\" data-prosemirror-content-type=\"mark\" data-prosemirror-mark-name=\"link\"><em data-prosemirror-content-type=\"mark\" data-prosemirror-mark-name=\"em\">GPP resource hub<\/em><\/a><em data-prosemirror-content-type=\"mark\" data-prosemirror-mark-name=\"em\">.<\/em><\/strong><\/p>\n<p data-prosemirror-content-type=\"node\" data-prosemirror-node-name=\"paragraph\" data-prosemirror-node-block=\"true\"><strong><em data-prosemirror-content-type=\"mark\" data-prosemirror-mark-name=\"em\">Jimmy shared his story during NORD\u2019s Rare Disease Day Community Conversation webinar. <\/em><a href=\"https:\/\/www.youtube.com\/watch?v=dJ5uwnxMpSs\" target=\"_blank\" rel=\"noopener nofollow\" data-prosemirror-content-type=\"mark\" data-prosemirror-mark-name=\"link\"><em data-prosemirror-content-type=\"mark\" data-prosemirror-mark-name=\"em\">Click here<\/em><\/a><em data-prosemirror-content-type=\"mark\" data-prosemirror-mark-name=\"em\"> to view a recording of that event. <\/em><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>In honor of Generalized Pustular Psoriasis (GPP) Awareness Day, coming up on Aug. 13, this NORD guest blog from the National Psoriasis Foundation details one man\u2019s story to find a &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/raising-awareness-of-gpp-jimmys-story\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> \u00abRaising Awareness of GPP: Jimmy\u2019s Story\u00bb<\/span><\/a><\/p>\n","protected":false},"author":37,"featured_media":280338,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[4343,505],"tags":[4357],"class_list":["post-280336","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-guest-blogs","category-patient-stories","tag-ran-2025-export"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/280336","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/37"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=280336"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/280336\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/280338"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=280336"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=280336"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=280336"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}