{"id":5044,"date":"2020-01-30T19:43:21","date_gmt":"2020-01-30T19:43:21","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=5044"},"modified":"2020-09-22T07:19:09","modified_gmt":"2020-09-22T07:19:09","slug":"pijn-vermoeidheid","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nl\/pain-fatigue\/","title":{"rendered":"Pijn en vermoeidheid"},"content":{"rendered":"<p><strong>Voor veel pati\u00ebnten zijn pijn en vermoeidheid een voortdurende herinnering aan het feit dat ze de ziekte van Erdheim-Chester hebben.<\/strong> Pain and fatigue can occur in ECD patients regardless of the presence or absence of BRAF mutations. These symptoms may be seen in newly diagnosed patients as well as those that are considered to be in remission* from the disease.<\/p>\n<p>Dankzij de toewijding van deskundige medische professionals zijn er dingen die een pati\u00ebnt zelf kan doen om pijn en vermoeidheid te verlichten.<\/p>\n<p>Onze nieuwste arts bij het ECD Care Center Network, dr. Gaurav Goyal, legt uit wat kan helpen:<\/p>\n<p>\u201cCancer related fatigue is a major challenge that we don&#8217;t have easy answers to. Exercise is indeed the single most important intervention that can help them. However, the best way to derive benefit is through structured programs targeting at least 150 minutes of exercise a week. Most of the popular gyms and medical facilities offer such programs specific to cancer patients. It can be difficult at times to do strenuous exercise if there are interfering symptoms. In that case, may discuss with your physician regarding alternative options (yoga, water exercises, etc.)\u201d<\/p>\n<p>Dr. Goyal noemde ook enkele andere mogelijkheden die pati\u00ebnten met hun arts zouden kunnen bespreken:<\/p>\n<ul>\n<li>Gelijktijdig gebruik van andere psychoactieve geneesmiddelen die vermoeidheid kunnen veroorzaken of verergeren \u2013 opio\u00efden, slaapmiddelen enz.<\/li>\n<li>Lack of good sleep- may discuss treatments for sleep and anxiety<\/li>\n<li>Farmacologische behandelingsmogelijkheden \u2013 het gebruik van stimulerende middelen zoals modafinil en methylfenidaat kan worden overwogen<\/li>\n<li>Cognitieve gedragstherapie en psychotherapie<\/li>\n<li>Interventies die lichaam en geest combineren \u2013 mindfulness-meditatie, yoga, enz. In de meeste steden zijn er talrijke plekken waar deze methoden gratis worden aangeboden.<\/li>\n<\/ul>\n<p>*Er bestaat momenteel geen genezing voor ECD. Er is sprake van remissie wanneer de ziekte zich in een slapende of inactieve toestand bevindt.<\/p>\n<p>Hieronder vind je links met meer informatie over dit onderwerp:<\/p>\n<p><a href=\"https:\/\/www.mayoclinic.org\/diseases-conditions\/cancer\/in-depth\/cancer-fatigue\/art-20047709\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.mayoclinic.org\/diseases-conditions\/cancer\/in-depth\/cancer-fatigue\/art-20047709<\/a><\/p>\n<p><a href=\"https:\/\/www.cancer.org\/treatment\/treatments-and-side-effects\/physical-side-effects\/fatigue\/what-is-cancer-related-fatigue.html\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.cancer.org\/treatment\/treatments-and-side-effects\/physical-side-effects\/fatigue\/what-is-cancer-related-fatigue.html<\/a><\/p>\n<p><a href=\"https:\/\/youtu.be\/_A2KIbcb4tk\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/youtu.be\/_A2KIbcb4tk<\/a> : Dr. Roei Mazor spreekt over de dagelijkse zorg voor ECD-pati\u00ebnten.<\/p>\n<p><a href=\"https:\/\/youtu.be\/QcEVBl9bTpY\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/youtu.be\/QcEVBl9bTpY<\/a>&nbsp;: Pati\u00ebnten en familieleden kunnen tijdens de Pati\u00ebnten- en Familiebijeenkomst 2019 vragen stellen aan de deskundigen.<\/p>\n<p>Other amazing and informative videos can be found on our YouTube channel. <a href=\"https:\/\/www.youtube.com\/channel\/UCYR3skRhqAFWC5PTOGv34JQ\/featured\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.youtube.com\/channel\/UCYR3skRhqAFWC5PTOGv34JQ\/featured<\/a><\/p>\n<p>&nbsp;<\/p>\n<p>Wat heeft u, als pati\u00ebnt of verzorger, als nuttig ervaren? Bezoek onze <a href=\"https:\/\/www.facebook.com\/groups\/784637751599933\/\" target=\"_blank\" rel=\"noopener noreferrer\">ECD-Facebookgroep<\/a> om hierover verder van gedachten te wisselen met andere ECD-pati\u00ebnten en verzorgers!<\/p>\n<p>Je kunt je antwoorden ook per e-mail sturen naar <span class=\"reverse\">chesnee.green@erdheim-chester.org<\/span>.<\/p>","protected":false},"excerpt":{"rendered":"<p>For many patients, pain and fatigue are a constant reminder of having Erdheim-Chester Disease. Pain and fatigue can occur in ECD patients regardless of the presence or absence of BRAF [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":5046,"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":[67],"tags":[55,54,59,53,58,56,69,57,68,52],"class_list":["post-5044","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","tag-advocacy","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-fatigue","tag-hairy-kidney","tag-pain","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/5044","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/comments?post=5044"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/5044\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media\/5046"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media?parent=5044"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/categories?post=5044"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/tags?post=5044"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}