{"id":59055,"date":"2019-10-01T15:05:13","date_gmt":"2019-10-01T19:05:13","guid":{"rendered":"https:\/\/rarediseases.org\/voices-of-rare-cancer-aidans-story\/"},"modified":"2019-10-01T15:05:13","modified_gmt":"2019-10-01T19:05:13","slug":"voices-of-rare-cancer-aidans-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/voices-of-rare-cancer-aidans-story\/","title":{"rendered":"Voices of Rare Cancer: Aidan’s Story"},"content":{"rendered":"

My name is Aidan, I am 19 years old and I have NF1. I have a large tumor on my neck, which goes up into my brain and down to my lungs and my left arm. I also have a number of smaller tumors throughout my body.<\/span><\/p>\n

I was diagnosed at 8 months old, became paralyzed at 15 months old, and again at 6 years old when my tumor was pressing on my spinal cord. I had to re-learn to walk both times. When I was 6 years old I had a first-ever surgery to rebuild my spine. I had two surgeries a week apart, was in traction and put in a halo for six months. We lived in the hospital for three months straight. I have had over twenty surgeries, four this year alone, and have been on some form of chemotherapy for 17 years. It has always been a struggle.<\/span><\/p>\n

I was diagnosed at around 2 months old, so I can’t remember life without NF. But healthcare has been a battle, even though I have healthcare. I’m constantly told I don’t need things even though I’ve been told by doctors I do. Treatments for NF are rare and I’ve been lucky to have a treatment via the NIH. I am actually one of the lucky people with NF; I\u2019m fortunate to have access to great doctors and the best care I could hope for. At the same time, I have been bullied, ignored and disregarded because of the way I look. When I walk down the street people stare at me. I understand because no one has seen someone who looks like me, but it is very, very hard. I just put my headphones on and try to do my own thing, but it\u2019s not easy.<\/span><\/p>\n

My mom sold our home at the end of Long Island and moved us to New York City because I was being so bullied at school. I have more freedom in New York because everyone looks different and I don\u2019t get noticed as much.\u00a0<\/span><\/p>\n

I am lucky to have such a wonderful support system and medical resources but I am fully aware that for most people with NF this is not the case.<\/span><\/p>\n

The selumetinib clinical trial has gone very well. Once it’s approved by the FDA I think it’s going to make a world of difference for those with type 1. I’m lucky to be in a spot where I have really good care. I’d like to help as many people as possible<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

My name is Aidan, I am 19 years old and I have NF1. I have a large tumor on my neck, which goes up into my brain and down to … <\/p>\n

Continue reading “Voices of Rare Cancer: Aidan’s Story”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[190,192,505],"tags":[621,2071,798],"class_list":["post-59055","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-patients-members","category-patient-stories","tag-awareness-day","tag-nf1","tag-rare-cancer"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59055","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59055"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59055\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59055"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59055"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59055"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}