{"id":30076,"date":"2024-12-31T12:02:30","date_gmt":"2024-12-31T18:02:30","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=30076"},"modified":"2025-10-02T09:57:53","modified_gmt":"2025-10-02T14:57:53","slug":"affrontare-una-malattia-rara-come-famiglia","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/it\/fighting-rare-disease-as-a-family\/","title":{"rendered":"Lotta contro le malattie rare come famiglia"},"content":{"rendered":"<p><strong>La storia di una famiglia britannica alle prese con la malattia di Erdheim-Chester.<\/strong><\/p>\n<p>Di Chesnee Green<br \/>\n13 settembre 2018<\/p>\n<p>I pazienti affetti dalla malattia di Erdheim-Chester (ECD) combattono una battaglia quotidiana per la loro salute mentale e fisica. Allo stesso modo, anche chi li assiste combatte una battaglia quotidiana. Molte volte, la storia che si cela dietro le quinte e dietro la malattia non viene raccontata n\u00e9 ascoltata. Un caregiver ha gentilmente accettato di raccontare la complessa storia che si cela dietro le quinte e che i caregiver affrontano ogni giorno.<\/p>\n<p>La storia di Lynda Rowland racconta in dettaglio la sua vita come badante della sua amata sorella Glenda e le difficolt\u00e0 che la famiglia ha dovuto affrontare.<\/p>\n<p>Nearly ten years prior to Glenda\u2019s diagnosis and twelve years prior to her untimely death, her ECD journey began. Lynda and family members began to notice slight changes in Glenda\u2019s behavior, such as eating outdated foods, leaving cooking surfaces on, not getting off the bus at her regular stops that she had been using for 13-years, constant thirst, and constantly feeling like she had flu-symptoms. Glenda would even do strange things followed by inappropriate laughter.<\/p>\n<p>Being a normal, sweet, hard-working middle-aged woman, these actions were simply out of the norm, strange, and concerning. The family would call Glenda \u201cdozey\u201d and said that it was just her \u201cfunny age.\u201d Unfortunately, these \u201cfunny age\u201d actions only worsened and caused even more concern to the family. The excessive thirst was so intense, Glenda began drinking anything and everything that she could get her hands on. Her balance was also becoming less controllable. These two symptoms together left Lynda to think that her sister had just became an alcoholic. Little did they know at the time this was not the case.<\/p>\n<p>Due to government cutbacks, medical resources were not readily available. Lynda thought that a brain tumor could be the cause of Glenda\u2019s new rash behaviors. With a lack of government funding and her doctors believing it was a brain bleed, there were no further tests and believed that it would go away with time.<\/p>\n<p>Like many others, the symptoms didn\u2019t go away, rather they worsened and so did the stress on the family. The symptoms compiled: coughing\/choking when eating or drinking, no balance and falling over, bladder failure, bowel incontinence, excessive drooling, more infections, hallucinations, and even more hospitalizations. At one point they catheterized Glenda, which only created more issues. Glenda would tug at the catheter, empty it at inappropriate times and places, or simply didn\u2019t empty it at all. This was very taxing on the family. At this point, she was diagnosed with multi-infarct dementia.<\/p>\n<p>Mentre la famiglia lottava, cercava sostegno! Glenda all\u2019epoca aveva circa 50 anni e semplicemente non esisteva alcun gruppo di sostegno adatto alla sua fascia d\u2019et\u00e0 o alle esigenze della famiglia. L\u2019unico sostegno disponibile non forniva in realt\u00e0 alcun sollievo. Poich\u00e9 Glenda era considerata mentalmente in grado di prendere le proprie decisioni, spesso si soffocava con cibi e bevande mentre era affidata alle cure di questi assistenti. Sebbene la famiglia avesse comunicato agli assistenti che Glenda non poteva assumere determinati cibi o bevande, l\u2019assistente era obbligato a seguire i desideri e le esigenze di Glenda.<\/p>\n<p>After nearly 10 years of struggling, \u201cThen the real stuff started to kick in\u2026\u201d says Lynda. Glenda could no longer walk, was doubly incontinent, had a damaged throat from regular choking, and a body structure that mimicked multiple sclerosis. Seeing doctor after doctor, as well as Lynda and the family\u2019s persistence, finally paid-off. They were given a proper diagnosis of Erdheim-Chester Disease.<\/p>\n<p>The diagnosis came as a total shock, after so many years of heartache and not knowing what they were dealing with. Living in the unknown can be very challenging on the body and the mind, but the diagnosis didn\u2019t end the struggle. The diagnosis was not found soon enough to benefit from the drugs that help ECD patients regain some control of their health.<\/p>\n<p>Glenda avrebbe dovuto essere ricoverata presto in una casa di cura. Le figlie di Glenda erano cos\u00ec terrorizzate all\u2019idea che potesse morire soffocata che la situazione era diventata letteralmente un incubo per tutta la famiglia. La settimana prima di morire, Glenda disse a Lynda che era stanca di tutto questo, stanca di lottare. Il 19 ottobre 2016, nel giorno del compleanno di sua nipote, Glenda \u00e8 venuta a mancare.<\/p>\n<p>ECD is not only a battle for the patient, it is a struggle for the caregivers and families that surround them. Early diagnosis is very important for ECD patients, as the long-term damage to their organs can often not be reversed.<\/p>\n<p><em>\u201cLa cura \u00e8 uno stato in cui qualcosa ha davvero importanza; \u00e8 la fonte della tenerezza umana.\u201d \u2013 <strong>Rollo May<\/strong><\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>What one UK family faced with Erdheim-Chester Disease. By Chesnee Green September 13, 2018 Erdheim-Chester Disease (ECD) patients are fighting a daily battle with their mental and physical health. Likewise, [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":103763,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[272],"tags":[],"class_list":["post-30076","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-voices-of-ecd"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/30076","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/comments?post=30076"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/30076\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media\/103763"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media?parent=30076"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/categories?post=30076"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/tags?post=30076"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}