{"id":8386,"date":"2020-10-29T10:13:37","date_gmt":"2020-10-28T23:13:37","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=8386"},"modified":"2020-10-29T10:15:42","modified_gmt":"2020-10-28T23:15:42","slug":"epidermolysis-bullosa-awareness-week-meet-ghadir","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/epidermolysis-bullosa-awareness-week-meet-ghadir\/","title":{"rendered":"Epidermolysis Bullosa Awareness Week – Meet Ghadir"},"content":{"rendered":"

This week is Epidermolysis Bullosa (EB) Awareness Week \u2013 a week dedicated to raising awareness, creating hope, and promoting the need for a cure on behalf of those living with EB.\u00a0<\/strong><\/p>\n

EB is a rare genetic disease that causes very fragile skin, where friction, bumps or knocks to the skin can result in painful blisters and wounds. Children with EB are often called butterfly children because their skin is as fragile as a butterfly\u2019s wings.<\/p>\n

\"\"<\/p>\n

Born with Recessive Dystrophic Epidermolysis Bullosa, twelve year old Ghadir is one of hundreds of children living with EB in Australia.<\/p>\n

Ghadir\u2019s mum, Iman says that living with the condition has been extremely hard on Ghadir and the family.<\/p>\n

\u201cEB is a very challenging condition with limitations for Ghadir. It’s difficult out in the community because many people don\u2019t know or understand his suffering.”<\/p>\n

\u201cHis interaction with others is difficult because they don’t know how to handle him, so he is often overlooked and he will sometimes ask questions as to why he isn\u2019t \u2018normal’. It also dictates what we can and can\u2019t do as a family,\u201d Iman said.<\/p>\n

Despite its challenges, treatment and management of Ghadir\u2019s condition at the RCH has allowed him to participate in many of the same activities as his siblings and friends.<\/p>\n

\u201cThe RCH has been absolutely marvelous. From day one they have been there for Ghadir and us as a family. From their treatment of Ghadir, to the clinical trials and the clinics they run, they go above and beyond.\u201d<\/p>\n

\u201cGhadir is a very active and energetic young boy. We\u2019re so grateful that he is able to play with his brother and sister and be part of a basketball team with his friends.”<\/p>\n

“He does require protective clothing in case of bumps or falls which in turn hampers his participation and effort, but he is very passionate about it.\u201d<\/p>\n

\"\"<\/p>\n

As for Ghadir, he\u2019s certainly not letting his condition hold him back.<\/p>\n

\u201cI would like to thank everyone at the RCH who have shown nothing but care and compassion towards me. As for living with EB, I\u2019d like to say it is only skin and that it won’t stop me being the best person I can be, now and in the future.\u201d<\/p>\n

To learn more about EB awareness week, please click here.<\/a> For more information about EB, visit our Kids Health Info fact sheet.<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

This week is Epidermolysis Bullosa (EB) Awareness Week \u2013 a week dedicated to raising awareness, creating hope, and promoting the need for a cure on behalf of those living with EB. \u00a0<\/p>\n","protected":false},"author":190,"featured_media":8396,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8971,6],"tags":[],"class_list":["post-8386","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","category-in-the-news"],"acf":[],"_links":{"self":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/8386","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/users\/190"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/comments?post=8386"}],"version-history":[{"count":20,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/8386\/revisions"}],"predecessor-version":[{"id":8409,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/8386\/revisions\/8409"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media\/8396"}],"wp:attachment":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media?parent=8386"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/categories?post=8386"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/tags?post=8386"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}