{"id":42985,"date":"2021-03-02T09:54:31","date_gmt":"2021-03-02T09:54:31","guid":{"rendered":"https:\/\/new.igihe.com\/how-manzi-got-inspired-into-establishing-a-rare-disease-management-center\/"},"modified":"2021-03-06T13:51:23","modified_gmt":"2021-03-06T13:51:23","slug":"how-manzi-got-inspired-into-establishing-a-rare-disease-management-center","status":"publish","type":"post","link":"https:\/\/new.igihe.com\/english\/how-manzi-got-inspired-into-establishing-a-rare-disease-management-center\/","title":{"rendered":"How Manzi got inspired into establishing a \u2018rare disease\u2019 management center"},"content":{"rendered":"<p>Upon arrival in India, the child was diagnosed with \u2018rare disease\u2019 known as \u2018William syndrome\u2019 and underwent heart surgery two times for improved health conditions.  <\/p>\n<p>\u2018Rare diseases\u2019 are characterized by a wide diversity of symptoms and signs that vary not only from disease to disease but also from patient to patient suffering from the same disease.<\/p>\n<p>Williams syndrome is believed to be a developmental disorder that affects many parts of the body. This condition is characterized by mild to moderate intellectual disability or learning problems, unique personality characteristics, distinctive facial features, and heart and blood vessel (cardiovascular) problems.<\/p>\n<p>The child grew with such health conditions and taken to school but the disease prevented him from being concentrated on studies like colleagues appropriately.  <\/p>\n<p>Parents sought an alternative, and looked for a private tutor taking care of him alone.  <\/p>\n<p>The alternative yielded big that the child\u2019s intellectual capacity developed and became literate. Today, he is attending vocational trainings like computer science, repairing damaged apparatuses and doing artistic works among others.  <\/p>\n<p>Parents were delighted with their child\u2019s progress that the father decided to help children with similar conditions to educate them with special attention on areas suiting their capability.  <\/p>\n<p>There are various types of rare diseases including \u2018William syndrome\u2019, \u2018Achalasia\u2019, \u2018Trisomy 21\u2019 and \u2018Autism\u2019 among others.  <\/p>\n<p>Figures from World Health Organization (WHO) show that 300 million people suffer from such diseases worldwide.  <\/p>\n<p>Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offerings inadequate and research limited.  This exposes patients to limited healthcare access and proper education.   <\/p>\n<p>Health experts show that people with such conditions need special attention to unleash their potential but such facilities taking care of them are rare in many countries including Rwanda.  <\/p>\n<p>It is under this context that Manzi and his wife Uwimbabazi decided to impact the society after realizing that their child was improving.   <\/p>\n<p>Speaking to IGIHE, Manzi has said that the disease couldn\u2019t allow her child to study advance courses with others and decided to provide special education.  <\/p>\n<p>\u201cOur child caught the disease at early age and failed to concentrate on studies like colleagues.  The time came when colleagues went to study in secondary schools but the child stayed at home.  He would join others in class but couldn\u2019t stay focused with the disease. I later contacted a private teacher for tutoring. The child is currently literate and has acquired basic skills,\u201d she said.  <\/p>\n<p>Inspired by her child\u2019s improvement, Manzi established \u2018Centre Alliance\u2019 to take care of children with similar conditions.  <\/p>\n<p>\u201cI have founded the center to acquaint children with basic life skills including how to read and write.  The center will, among other things, help children to socialize and get familiar with the society.  We will also engage with parents to comfort them and offer course packages on rare diseases helping parents to take care of children,\u201d she revealed.  <\/p>\n<p>Manzi requested parents rush to register their children to the center to get assistance.  <\/p>\n<p>\u201cSome parents stigmatize children with such conditions and isolate them yet they are able to achieve great things if they potential is unleashed,\u201d she said.  <\/p>\n<p>Rwanda joined the world to celebrate Rare Diseases Day on 28th February 2021. In Rwanda, it was celebrated under the theme \u2018I can\u2019t make it alone, but we can achieve great things together\u2019.  <\/p>\n<figure class=\"spip-document spip-document-37919 aligncenter\"><img decoding=\"async\" src=\"https:\/\/en-images.igihe.com\/jpg\/alliance_iherereye_mu_kiyovu_hafi_ya_la_gardienne.jpg\" alt=\"Centre Alliance is located in Kiyovu nearby La Gardienne.  \" \/><\/figure>\n<figure class=\"spip-document spip-document-37920 aligncenter\"><img decoding=\"async\" src=\"https:\/\/en-images.igihe.com\/jpg\/hari_imbuga_yisanzuye_abana_bazajya_bakinirimo_bakisanzura_nk_abandi-5c357.jpg\" alt=\"Centre Alliance has ample premises facilitating children&#039;s  leisure.  \" \/><\/figure>\n<figure class=\"spip-document spip-document-37921 aligncenter\"><img decoding=\"async\" src=\"https:\/\/en-images.igihe.com\/jpg\/abana_bazajya_bigishwa_n_abarimu_babo_mu_buryo_bwihariye-2.jpg\" alt=\"Centre Alliance is well prepared to assist children with rare diseases.  \" \/><\/figure>\n<figure class=\"spip-document spip-document-37922 aligncenter\"><img decoding=\"async\" src=\"https:\/\/en-images.igihe.com\/jpg\/abana_bazajya_bahabwa_amasomo_ajyanye_n_ubugeni_mu_kuvumbura_impano_bifitemo-17127-2.jpg\" alt=\"Children will be acquainted with different skills.  \" \/><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>{Ndamukunze Manzi\u2019s family have a child who caught a chronic disease and taken for special treatment in India in 2004. } <\/p>\n","protected":false},"author":62,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[72,75],"byline":[170],"hashtag":[],"class_list":["post-42985","post","type-post","status-publish","format-standard","hentry","category-news","tag-featured-news-home","tag-homenews","byline-igihe"],"bylines":[{"id":170,"name":"IGIHE","slug":"igihe","description":"","image":{"id":0,"url":"https:\/\/secure.gravatar.com\/avatar\/?s=96&d=mm&f=y&r=g","alt":"Default avatar","title":"Default avatar","caption":"","mime_type":"image\/jpeg","sizes":[]},"user_id":8}],"contributors":[{"id":170,"name":"IGIHE","slug":"igihe","description":"","image":{"id":0,"url":"https:\/\/secure.gravatar.com\/avatar\/?s=96&d=mm&f=y&r=g","alt":"Default avatar","title":"Default avatar","caption":"","mime_type":"image\/jpeg","sizes":[]},"user_id":8}],"featured_image":null,"_links":{"self":[{"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/posts\/42985","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/users\/62"}],"replies":[{"embeddable":true,"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/comments?post=42985"}],"version-history":[{"count":0,"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/posts\/42985\/revisions"}],"wp:attachment":[{"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/media?parent=42985"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/categories?post=42985"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/tags?post=42985"},{"taxonomy":"byline","embeddable":true,"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/byline?post=42985"},{"taxonomy":"hashtag","embeddable":true,"href":"https:\/\/new.igihe.com\/english\/wp-json\/wp\/v2\/hashtag?post=42985"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}