{"id":777,"date":"2024-05-09T02:59:58","date_gmt":"2024-05-09T02:59:58","guid":{"rendered":"https:\/\/ilf.cricp.org.uk\/?page_id=777"},"modified":"2026-06-29T13:36:37","modified_gmt":"2026-06-29T13:36:37","slug":"living-well-with-lymphoedema","status":"publish","type":"page","link":"https:\/\/ilf.cricp.org.uk\/?page_id=777","title":{"rendered":"Living with lymphoedema"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><strong>5. Living with Lymphedema (Living Well Village)<\/strong><\/p>\n\n\n\n<ol class=\"wp-block-list\">\n<li><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-red-color\">Are there any activities my child should avoid?<\/mark><\/li>\n\n\n\n<li><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-red-color\">Are there any foods or drinks that should absolutely be avoided?<\/mark><\/li>\n\n\n\n<li><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-red-color\">Are there support groups for children with lymphedema and their families?<\/mark><\/li>\n<\/ol>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>SPORT<\/strong><\/p>\n\n\n\n<ol start=\"4\" class=\"wp-block-list\">\n<li>Can my child participate in sports and physical activities?<\/li>\n\n\n\n<li>What exercises are most beneficial for children with lymphedema?<\/li>\n<\/ol>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>FOOD<\/strong><\/p>\n\n\n\n<ol start=\"6\" class=\"wp-block-list\">\n<li>What kind of food is better or worse for lymphedema?<\/li>\n\n\n\n<li>&nbsp;Is there any special nutrition for lymphedema?<\/li>\n<\/ol>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>EMOTIONAL<\/strong><\/p>\n\n\n\n<ol start=\"8\" class=\"wp-block-list\">\n<li>How can we support our child\u2019s emotional well-being?<\/li>\n\n\n\n<li>How can we help our child cope with questions or comments from peers?<\/li>\n<\/ol>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>TRAVELLING\/HOLIDAY<\/strong><\/p>\n\n\n\n<ol start=\"10\" class=\"wp-block-list\">\n<li>Are there any restrictions on travel, especially flying?<\/li>\n\n\n\n<li>What precautions should we take during hot weather?<\/li>\n<\/ol>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>SCHOOL<\/strong><\/p>\n\n\n\n<ol start=\"12\" class=\"wp-block-list\">\n<li>Should teachers and caregivers receive special instructions?<\/li>\n<\/ol>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>CLOTHING<\/strong><\/p>\n\n\n\n<ol start=\"13\" class=\"wp-block-list\">\n<li>Is good footwear important for my child?<\/li>\n<\/ol>\n\n\n\n<div class=\"wp-block-media-text is-stacked-on-mobile is-vertically-aligned-top\" style=\"grid-template-columns:20% auto\"><figure class=\"wp-block-media-text__media\"><a href=\"https:\/\/ilf.cricp.org.uk\/?page_id=1480\"><img loading=\"lazy\" decoding=\"async\" width=\"122\" height=\"174\" src=\"https:\/\/ilf.cricp.org.uk\/wp-content\/uploads\/2026\/06\/image-5.png\" alt=\"\" class=\"wp-image-1532 size-full\"\/><\/a><\/figure><div class=\"wp-block-media-text__content\">\n<p class=\"has-text-align-center alignfull wp-block-paragraph\"><mark style=\"background-color:#a4f2f299\" class=\"has-inline-color has-blue-color\"><strong>Research and future care<\/strong><\/mark><\/p>\n<\/div><\/div>\n\n\n<div class=\"wp-block-paragraph\"><div class=\"category section\"><h4>Living well<\/h4><ul><li><a href=\"https:\/\/ilf.cricp.org.uk\/?p=1055\">7* Campo Ludico educativo per bambini<\/a><\/li><li><a href=\"https:\/\/ilf.cricp.org.uk\/?p=1577\">A Child's View<\/a><\/li><li><a href=\"https:\/\/ilf.cricp.org.uk\/?p=1047\">Att leva med lymf\u00f6dem<\/a><\/li><li><a href=\"https:\/\/ilf.cricp.org.uk\/?p=608\">Care of Children with Lymph\u0153dema<\/a><\/li><li><a href=\"https:\/\/ilf.cricp.org.uk\/?p=1049\">ILF International Children's Camp, Turin, Italy 2017<\/a><\/li><li><a href=\"https:\/\/ilf.cricp.org.uk\/?p=1053\">Lymph\u0153dema Children's Camp 2020 - Lymphido<\/a><\/li><li><a href=\"https:\/\/ilf.cricp.org.uk\/?p=1030\">Lymph\u0153dema - a child's perspective<\/a><\/li><li><a href=\"https:\/\/ilf.cricp.org.uk\/?p=1041\">Lymph\u0153dema - a teenager's perspective<\/a><\/li><li><a href=\"https:\/\/ilf.cricp.org.uk\/?p=999\">Mon lymph\u0153d\u00e8me primaires en quelque mots<\/a><\/li><\/ul><\/div><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Frequently asked questions awaiting replies:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>What measures can I take to help prevent infections for my child? <\/li>\n\n\n\n<li>What measures can I take to help prevent infections for the child? <\/li>\n\n\n\n<li>What is MCT (medium-chain triglycerides) diet and how does it work? <\/li>\n\n\n\n<li>Can we get reimbursement for compression garments? <\/li>\n\n\n\n<li>What kind of treatment is available for my child? <\/li>\n\n\n\n<li>What are the different type of treatments available for lymphoedema? <\/li>\n\n\n\n<li>What exercise can my child do\/is there some exercise that can make it worse\/better? <\/li>\n\n\n\n<li>What physical activities are recommended for a child with lymphoedema? <\/li>\n\n\n\n<li>Questions on made to measure\/orthop\u00e6dic shoes\u2026how and where to get them (application process) <\/li>\n\n\n\n<li>Management of genital lymphedema <\/li>\n\n\n\n<li>Are there any support groups for parents of children with lymphoedema? <\/li>\n\n\n\n<li>Are there any support groups for children with lymphoedema? Online\/locally? <\/li>\n\n\n\n<li>Surgery for children \u2013 what age is appropriate (is there a too young stage?) <\/li>\n\n\n\n<li>What kind or surgical options are available and at what age is it appropriate? <\/li>\n\n\n\n<li>How can we get supplies of hosiery when our child needs it? <\/li>\n\n\n\n<li>Where can I buy clothes that will fit my child and that are age-appropriate? <\/li>\n\n\n\n<li>How can we ensure schools understand our child\u2019s condition? <\/li>\n\n\n\n<li>How can we help our child who is being bullied at school because of the hosiery\/shoes that he wears? <\/li>\n\n\n\n<li>My child does not always want to wear their compression garments, is it ok to have \u201cdays off\u201d? <\/li>\n\n\n\n<li>My child does not always want to wear their compression garments, is it ok to have \u201cdays off\u201d? <\/li>\n\n\n\n<li>When is it time for my child (at what age) to be involved in their own care? Take on compression garments by themselves\u2026.skin care etc. <\/li>\n\n\n\n<li>At what age can the child begin to take on some of the self-care activities such as skin care? <\/li>\n\n\n\n<li>Mental health support available (where\/what) <\/li>\n\n\n\n<li>What kind of mental health support is available and how will I know when the child needs it? <\/li>\n\n\n\n<li>How can I deal with other peoples opinion and \u201cgood advice\u201d about my child\u2019s lymphoedema <\/li>\n\n\n\n<li>How can I manage with other peoples opinion and \u201cgood advice\u201d about my child\u2019s lymphoedema <\/li>\n\n\n\n<li>How often should elastic stockings be replaced\/changed? <\/li>\n\n\n\n<li>How many garments does the child need and how often do they need to be changed? <\/li>\n\n\n\n<li>Given the natural reticence of young people to treat themselves methodically, what treatment\/aid is most appropriate to be intransigent with them? <\/li>\n\n\n\n<li>How can we motivate a teenager to be more involved in their treatment? <\/li>\n\n\n\n<li>Can the shoes provided by the hospital be more fashionable? <\/li>\n\n\n\n<li>Why are specialist services so far from our local area? <\/li>\n\n\n\n<li>What is a specialist centre and where can I find it in my country? <\/li>\n\n\n\n<li>What kind of food is better or worse for the lymphedema? (especially for those with need of MCT diet this is an issue as there is not much information on a practical level) <\/li>\n\n\n\n<li>Are there any diets suitable for those with lymphoedema, and are there food groups more or less beneficial or harmful? <\/li>\n\n\n\n<li>Why are there so few experts in the field of lymphoedema causing us to have to wait a long time for diagnosis? <\/li>\n\n\n\n<li>Why is lymphoedema not well known and why are there so few doctors who knows about it? <\/li>\n\n\n\n<li>Our daughter is unable to buy shoes in the High Street so they are made at the hospital. Can she have more than one pair at a time? <\/li>\n\n\n\n<li>Why are children not offered preventative MLD? <\/li>\n\n\n\n<li>Are there any foods\/drinks that should absolutely be avoided? <\/li>\n\n\n\n<li>How to manage elastic stockings in children going to school who are not autonomous to manage it on their own? <\/li>\n\n\n\n<li>How can compression stockings be managed in nursery? <\/li>\n\n\n\n<li>Can we get reimbursement for made to measure shoes? <\/li>\n\n\n\n<li>How can we work with the nursery\/school to identify problems with the compression garments? <\/li>\n\n\n\n<li>How can we work with the school\/nursery to make them understand lymphedema and reduce the risk of bullying? <\/li>\n\n\n\n<li>Can we get funding for MLD? <\/li>\n\n\n\n<li>Can we get reimbursement for manual lymphatic drainage? <\/li>\n\n\n\n<li>Can we pay for extra hosiery if our child needs it? <\/li>\n\n\n\n<li>Should I\/my child get\/can I get a genetic test for my child\/me? <\/li>\n\n\n\n<li>What is the purpose of a genetic test? <\/li>\n\n\n\n<li>What brands or shops\/online stores sell shoes\/clothes that is accommodating for lymphedema?<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>5. Living with Lymphedema (Living Well Village) SPORT FOOD EMOTIONAL TRAVELLING\/HOLIDAY SCHOOL CLOTHING Research and future care Frequently asked questions awaiting replies:<\/p>\n","protected":false},"author":21,"featured_media":0,"parent":654,"menu_order":5,"comment_status":"open","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-777","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/ilf.cricp.org.uk\/index.php?rest_route=\/wp\/v2\/pages\/777","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ilf.cricp.org.uk\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/ilf.cricp.org.uk\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/ilf.cricp.org.uk\/index.php?rest_route=\/wp\/v2\/users\/21"}],"replies":[{"embeddable":true,"href":"https:\/\/ilf.cricp.org.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=777"}],"version-history":[{"count":8,"href":"https:\/\/ilf.cricp.org.uk\/index.php?rest_route=\/wp\/v2\/pages\/777\/revisions"}],"predecessor-version":[{"id":1571,"href":"https:\/\/ilf.cricp.org.uk\/index.php?rest_route=\/wp\/v2\/pages\/777\/revisions\/1571"}],"up":[{"embeddable":true,"href":"https:\/\/ilf.cricp.org.uk\/index.php?rest_route=\/wp\/v2\/pages\/654"}],"wp:attachment":[{"href":"https:\/\/ilf.cricp.org.uk\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=777"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}