It was exciting to see the objectives of the Thalassemia Support Foundation being realized in a very tangible way during the recent conference at Children\u00e2\u20ac\u2122s Hospital Los Angeles.\u00c2\u00a0 The evolving theme throughout the conference was how to better manage your health and family life, i.e. improve quality of life while living with thalassemia.<\/p>\n
Doctor Thomas Coates was excellent in his explanation of thalassemia and the importance of complying with the individual\u00e2\u20ac\u2122s medical requirements.\u00c2\u00a0 He acknowledged the difficulty in complying, yet noted that when the patient complies with medical care, life expectancy is projected to be long and productive, versus a median age of fifteen, which was the case in 1970.<\/p>\n
An individual\u00e2\u20ac\u2122s story is a profound way to give back to the community.\u00c2\u00a0 The panel, consisting of patients and a parent, told their stories of struggles, despair, challenges, and triumphs.\u00c2\u00a0 In each life story, it was clear that having thalassemia added another very significant layer of complication on ones life.\u00c2\u00a0 Yet through the help of community and knowledgeable medical professionals, each panel member talked about becoming stronger in their uniqueness and excelling in life.<\/p>\n
Community gives strength and shared knowledge. The separate groups of patients and spouses, and parents and family provided excellent opportunities to share experiences in a very real and helpful way. \u00c2\u00a0It cannot be said better than Lance Sevier, a father, said in his note to the board.<\/p>\n
\u00e2\u20ac\u0153The opportunity to talk with, and ask questions of, other parents was wonderful. I think I learned the most from the real life experiences of patients and families … shared with such honesty, openness, and tears. Our 4 year old daughter, Hannah, has a long and productive life ahead of her and we are better able to support her because of all we have learned.\u00e2\u20ac\u009d<\/i><\/p>\n
<\/i>\u00c2\u00a0Thanks to all who participated and attended.\u00c2\u00a0 It was great to have representation from the Sickle Cell community and from California Public Health.<\/p>\n","protected":false},"excerpt":{"rendered":"
It was exciting to see the objectives of the Thalassemia Support Foundation being realized in a very tangible way during the recent conference at Children\u00e2\u20ac\u2122s Hospital Los Angeles.\u00c2\u00a0 The evolving theme throughout the conference was how to better manage your health and family life, i.e. improve quality of life while living with thalassemia. Doctor Thomas […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[],"class_list":["post-341","post","type-post","status-publish","format-standard","hentry","category-events"],"_links":{"self":[{"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/posts\/341","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/comments?post=341"}],"version-history":[{"count":2,"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/posts\/341\/revisions"}],"predecessor-version":[{"id":343,"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/posts\/341\/revisions\/343"}],"wp:attachment":[{"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/media?parent=341"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/categories?post=341"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.helpthals.org\/blog\/wp-json\/wp\/v2\/tags?post=341"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}