{"id":59233,"date":"2021-01-24T22:26:26","date_gmt":"2021-01-25T03:26:26","guid":{"rendered":"https:\/\/rarediseases.org\/tristans-story-in-honor-of-rare-disease-day\/"},"modified":"2021-01-24T22:26:26","modified_gmt":"2021-01-25T03:26:26","slug":"tristans-story-in-honor-of-rare-disease-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/tristans-story-in-honor-of-rare-disease-day\/","title":{"rendered":"Tristan’s Story in Honor of Rare Disease Day"},"content":{"rendered":"

You are featured in the\u00a0<\/span><\/b>2021\u00a0<\/span><\/b>Rare Disease Day\u00a0<\/span><\/b>international<\/span><\/b>\u00a0campaign<\/span><\/b>\u00a0as a patient \u201chero\u201d from the United States<\/span><\/b>. Why is Rare Disease Day important to you?<\/span><\/b><\/p>\n

I<\/span>‘m so honored to be a part of this amazing campaign. Rare Disease Day is important to me because it’s a day whe<\/span>n<\/span>\u00a0a spotlight is focused on people worldwide who are living with rare diseases that most people don’t even know exist. We are given the opportunity to show up and represent ourselves as well as\u00a0<\/span>our<\/span>\u00a0rare disease community. On Rare Disease Day people from all different walks of life come together<\/span>, and it<\/span>‘s beautiful\u00a0<\/span>thing<\/span>. Watching, learning and listening to each other’s stories is awe<\/span>–<\/span>inspirin<\/span>g; raising awareness and having the world<\/span>\u00a0become more understanding<\/span>\u00a0about life with rare disease<\/span>\u00a0<\/span>is incredible. I’m so happy a day like th<\/span>is<\/span>\u00a0happens every year.\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n

 <\/p>\n

Is there one thing you\u2019d like the world to know about life with a rare disease?<\/span><\/b><\/p>\n

Living life w<\/span>ith a rare disease like sickle cell is a roller coaster at times. There are many ups, downs, twists and turns\u00a0<\/span>daily<\/span>. Some days I feel great, as if I could conquer whatever the day will bring. The next day, or even a couple of hours later in that same day, I can feel drained, run down and pained from sickle cell fatigue. I\u2019m constantly trying to map out how much energy I will have to tackle daily tasks. That\u2019s why I usually schedule any medical appointments or physical therapy for the\u00a0<\/span>early\u00a0<\/span>afternoon. I know that I tend to have more energy to accomplish tasks after 1:30pm, or 2pm. Once 5:00pm hits I start to slow down, and by that time I\u2019m making dinner<\/span>,<\/span>\u00a0which leads into the\u00a0<\/span>evening and<\/span>\u00a0<\/span>chillax<\/span>i<\/span>n<\/span>\u2019<\/span>\u00a0with my family for the rest of the night. On the rare occasion that I do have\u00a0<\/span>early\u00a0<\/span>morning<\/span>\u00a0<\/span>things to do<\/span>,<\/span>\u00a0I\u2019ll go at my own pace. That\u2019s what\u00a0<\/span>living with a rare disease<\/span>\u00a0is like for me<\/span>: unpredictable but manageable<\/span>.\u00a0<\/span>\u00a0<\/span><\/p>\n

 <\/p>\n

What have you learned from living with a rare disease?<\/span><\/b><\/p>\n

What I\u2019ve learned over the years is that you always\u00a0<\/span>have to<\/span>\u00a0stay ready. Because this life comes at you\u00a0<\/span>fast and<\/span>\u00a0can flip you and your family’s world upside down in a hurry. One minute you can be laughing at a party<\/span>,<\/span>\u00a0kicking it with friends. Then a minute later<\/span>,<\/span>\u00a0in the same night during that same party<\/span>,<\/span>\u00a0your friends are literally carrying you out screaming and crying in pain due to a sickle cell pain crisis that came on\u00a0<\/span>all of a sudden<\/span>. That\u2019s a true story. Thank God I was with my best friends who knew about my rare disease and got me to the ER within minutes, while another friend called my Mom to let her know what was happening. This was when I was 19 years-old at a college party at 12:30am at night too. So that\u2019s what I mean by always staying ready. We\u2019ve even gotten to the point that I always have a \u201cgo bag\u201d specifically packed with my things for an ER\/hospital stay if need be. That way I can grab it on my way out the door<\/span>, just in case<\/span>. It’s\u00a0<\/span>part of<\/span>\u00a0my reality of life with a rare disease.\u00a0<\/span>\u00a0<\/span><\/p>\n

 <\/p>\n

\u201cWhen you have a life-threatening disease like sickle cell, it really opens your eyes to value your time and the time of those around you more\u201d Care to expand on this thought?<\/span><\/b>\u00a0<\/span><\/p>\n

What I mean is life is precious. Everyone is on borrowed time, and no one is promised tomorrow. When you have a life-threatening disease like sickle\u00a0<\/span>cell<\/span>\u00a0you\u2019re constantly being told that by doctors and other medical professionals. I believe<\/span>,<\/span>\u00a0as I always have<\/span>,<\/span>\u00a0that God has the final say about everyone\u2019s life, hence my still living well with sickle cell at 37 even though doctors told my Mom when I was diagnosed at six months that I wouldn\u2019t live past 20! (<\/span>Thanks<\/span>\u00a0and praise to God for that blessing.) However, hearing stuff like that over and over, you start to look at not only your life differently, but also at your loved ones<\/span>\u2019<\/span>\u00a0lives too. Knowing that every minute you have with them is precious, every laugh you get with them is a special moment in time that will eventually become a memory. I just don\u2019t take life for granted\u2014not mine or my loved one\u2019s\u2014because life is something to be valued and cherished.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u00a0<\/span><\/p>\n

What\u2019s next for you to conquer? Any big plans, goals, dreams?<\/span><\/b>\u00a0<\/span><\/p>\n

That\u2019s a good question. I can\u2019t wait to get back to doing in person\/public fashion shows again. I\u2019ve so missed being at New York Fashion week and sharing public spaces with people comfortably. You know, the way life was before COVID-19. I want to get back to vacations and traveling with my family. Going out to dinner with friends. Also, I really want to have kids. It\u2019s always been one of my biggest dreams in life. And I plan on continuing my advocacy work as a professional patient advocate and ambassador for various sickle cell disease orgs, raising sickle cell awareness until we have a universal cure for everyone living with this disease. I\u2019m going to continue working on becoming a well-known national and international public figure to really have a platform and a huge voice to help continue to bring about awareness to rare diseases, people w<\/span>ith<\/span>\u00a0disabilities and sickle cell disease in all mainstream media worldwide. That\u2019s the plan. \ud83d\ude09<\/span>\u00a0<\/span><\/p>\n

\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

You are featured in the\u00a02021\u00a0Rare Disease Day\u00a0international\u00a0campaign\u00a0as a patient \u201chero\u201d from the United States. Why is Rare Disease Day important to you? I‘m so honored to be a part of … <\/p>\n

Continue reading “Tristan’s Story in Honor of Rare Disease Day”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":13069,"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":[505,1827],"tags":[],"class_list":["post-59233","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","category-rare-disease-day"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59233","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=59233"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59233\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13069"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59233"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59233"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59233"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}