{"id":59295,"date":"2021-09-30T13:30:56","date_gmt":"2021-09-30T17:30:56","guid":{"rendered":"https:\/\/rarediseases.org\/loneliness-connection-and-mesothelioma-tamrons-rare-disease-story\/"},"modified":"2026-08-04T12:08:31","modified_gmt":"2026-08-04T16:08:31","slug":"loneliness-connection-and-mesothelioma-tamrons-rare-disease-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/loneliness-connection-and-mesothelioma-tamrons-rare-disease-story\/","title":{"rendered":"Loneliness, Connection and Mesothelioma: Tamron\u2019s Rare Disease Story"},"content":{"rendered":"

I was diagnosed with peritoneal mesothelioma in 2007\u00a0as a 21-year-old new mother.\u00a0When the doctor told me I had peritoneal mesothelioma,\u00a0I\u00a0didn\u2019t\u00a0know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone.\u00a0Feeling alone when faced with a diagnosis of a rare disease is common. That feeling of loneliness\u00a0actually connects\u00a0us.<\/span><\/p>\n

What I learned on my personal journey with a rare disease is there are many of us looking for support and connection.\u00a0In addition to my own network of support,\u00a0thanks to family,\u00a0friends\u00a0and doctors, I have found meaningful connections in support groups\u00a0and\u00a0in sharing my story with others.<\/span>\u00a0<\/span><\/p>\n

Being diagnosed with any serious disease is challenging, but there are specific issues people with rare diseases can face.\u00a0Some of these include delays in\u00a0initial\u00a0diagnosis, lack of knowledge about rare diseases among primary medical teams, difficulty accessing treatment options, financial\u00a0strain\u00a0and inequalities in healthcare.\u00a0I experienced some of these challenges personally. My diagnosis was delayed because when a tumor was found, I was pregnant. It was treated as a\u00a0fibroid,\u00a0and I\u00a0spent\u00a0my entire pregnancy with peritoneal\u00a0mesothelioma but\u00a0without\u00a0knowing\u00a0it. It\u00a0wasn\u2019t\u00a0until five months after I gave birth that I found out what I really had.<\/span><\/p>\n

My doctor at the time\u00a0didn\u2019t\u00a0know much about my rare disease, which made learning about and accessing treatment more challenging. Fortunately for me, someone from my mom\u2019s job told her about Dr. Edward Levine, a specialist who knew a lot about mesothelioma. I always say that I was in the right place at the right time because the specialist was in my hometown.<\/span>\u00a0<\/span><\/p>\n

As a woman diagnosed with mesothelioma<\/a> at just 21 years of age, I\u00a0didn\u2019t\u00a0fall into any of the usual categories. Mesothelioma is mostly diagnosed in men over the age of 65. Research now shows women make up\u00a0nearly a\u00a0fourth of mesothelioma cases, but rarely\u00a0are those affected\u00a0as young as me.<\/span><\/p>\n

Before I was diagnosed with mesothelioma, I had never met anyone who had been diagnosed with it.\u00a0After all, mesothelioma\u00a0doesn\u2019t\u00a0get as much publicity as other cancers such as breast cancer or colon cancer. If a rare disease\u00a0isn\u2019t\u00a0publicized enough, how will patients and families know which direction to take?<\/span>\u00a0<\/span><\/p>\n

I believe everyone has a story to tell and sharing it can help us feel less alone. Since connecting with groups like The Mesothelioma Center and sharing my personal story as a survivor, I\u2019ve become an active part of support groups for people living with mesothelioma. I will continue to share my story with others on social media and on mesotheliomaguide.com to help raise awareness about this rare cancer. In doing so, I hope that my story helps readers with rare diseases feel less alone and feel empowered to make connections to help them navigate the challenges with support.<\/span>\u00a0<\/span><\/p>\n

The National Organization for Rare Disorders (NORD) is committed to telling the stories of patients and families with rare or undiagnosed diseases and helping them live their best rare lives. If you would like to share your story, contact NORD\u00a0<\/span><\/i>here<\/span><\/i><\/a>.<\/span><\/i>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

I was diagnosed with peritoneal mesothelioma in 2007\u00a0as a 21-year-old new mother.\u00a0When the doctor told me I had peritoneal mesothelioma,\u00a0I\u00a0didn\u2019t\u00a0know what it was. I was overwhelmed with shock and confusion … <\/p>\n

Continue reading “Loneliness, Connection and Mesothelioma: Tamron\u2019s Rare Disease Story”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13164,"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":[192,505,2754],"tags":[203,249,2776,2779,2767,2176,2778,2780,2781,798,315],"class_list":["post-59295","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patients-members","category-patient-stories","category-voices-of-rare-cancer","tag-cancer","tag-diagnosis","tag-family","tag-mesothelioma","tag-patient","tag-patient-story","tag-peritoneal-mesothelioma","tag-pregnancy","tag-pregnant","tag-rare-cancer","tag-rare-disease"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59295","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=59295"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59295\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13164"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59295"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59295"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59295"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}