{"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":"lutter-contre-une-maladie-rare-en-famille","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/fighting-rare-disease-as-a-family\/","title":{"rendered":"Lutter contre une maladie rare en famille"},"content":{"rendered":"

Le parcours d'une famille britannique confront\u00e9e \u00e0 la maladie d'Erdheim-Chester.<\/strong><\/p>\n

Par Chesnee Green
\n13 septembre 2018<\/p>\n

Les patients atteints de la maladie d'Erdheim-Chester (ECD) m\u00e8nent un combat quotidien pour pr\u00e9server leur sant\u00e9 mentale et physique. De m\u00eame, leurs aidants m\u00e8nent eux aussi un combat quotidien. Souvent, l'histoire qui se cache derri\u00e8re les coulisses de la maladie n'est ni racont\u00e9e ni entendue. Une aidante a bien voulu nous raconter l\u2019histoire complexe, celle des coulisses, \u00e0 laquelle les aidants sont confront\u00e9s chaque jour.<\/p>\n

Le r\u00e9cit de Lynda Rowland retrace sa vie en tant qu'aidante aupr\u00e8s de sa s\u0153ur bien-aim\u00e9e, Glenda, ainsi que les \u00e9preuves auxquelles la famille a d\u00fb faire face.<\/p>\n

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 Lynda and family members began to notice slight changes in Glenda\u2019s behavior, such as eating outdated foods, leaving cooking surfaces on, not getting off the bus at her regular stops that she had been using for 13-years, constant thirst, and constantly feeling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

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

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

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

Alors que la famille traversait cette \u00e9preuve, elle cherchait de l\u2019aide ! Glenda avait alors une cinquantaine d\u2019ann\u00e9es et il n\u2019existait tout simplement aucun groupe de soutien adapt\u00e9 \u00e0 sa tranche d\u2019\u00e2ge ni aux besoins de la famille. Le seul soutien disponible ne lui apportait en r\u00e9alit\u00e9 aucun r\u00e9pit. Comme Glenda \u00e9tait consid\u00e9r\u00e9e comme mentalement capable de prendre ses propres d\u00e9cisions, elle s'\u00e9touffait souvent avec de la nourriture ou des boissons lorsqu'elle \u00e9tait sous la garde de ces aidants. Bien que la famille ait pr\u00e9cis\u00e9 aux aidants que Glenda ne pouvait pas consommer certains aliments ou boissons, ceux-ci \u00e9taient tenus de se plier aux envies et aux besoins de Glenda.<\/p>\n

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

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

Glenda allait bient\u00f4t devoir \u00eatre plac\u00e9e dans une maison de retraite. Ses filles \u00e9taient tellement terrifi\u00e9es \u00e0 l\u2019id\u00e9e qu\u2019elle puisse mourir \u00e9touff\u00e9e que cela \u00e9tait litt\u00e9ralement devenu un v\u00e9ritable cauchemar pour toute la famille. La semaine pr\u00e9c\u00e9dant son d\u00e9c\u00e8s, Glenda a confi\u00e9 \u00e0 Lynda qu\u2019elle en avait assez, qu\u2019elle \u00e9tait fatigu\u00e9e de se battre. Le 19 octobre 2016, le jour de l'anniversaire de sa ni\u00e8ce, Glenda s'est \u00e9teinte.<\/p>\n

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

\u201c L\u2019attention est un \u00e9tat dans lequel quelque chose a de l\u2019importance ; c\u2019est la source de la tendresse humaine. \u201d \u2013 Rollo May<\/strong><\/em><\/p>","protected":false},"excerpt":{"rendered":"

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, […]<\/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\/fr\/wp-json\/wp\/v2\/posts\/30076","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=30076"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/30076\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/103763"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=30076"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=30076"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=30076"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}