{"id":59250,"date":"2021-02-23T00:03:55","date_gmt":"2021-02-23T05:03:55","guid":{"rendered":"https:\/\/rarediseases.org\/tara-zs-story-in-honor-of-rare-disease-day\/"},"modified":"2022-12-02T08:14:33","modified_gmt":"2022-12-02T13:14:33","slug":"tara-zs-story-in-honor-of-rare-disease-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/tara-zs-story-in-honor-of-rare-disease-day\/","title":{"rendered":"Tara Z\u2019s Story in Honor of Rare Disease Day"},"content":{"rendered":"

I was diagnosed with\u00a0<\/span>s<\/span>tiff\u00a0<\/span>p<\/span>erson\u00a0<\/span>s<\/span>yndrome\u00a0<\/span>(SPS) on a Monday night in October of 2017. The<\/span> impact<\/span>\u00a0of\u00a0<\/span>my condition<\/span>\u00a0on my life has been tremendous. My symptoms started after I lost my former husband to suicide in 2014. My kids were eleven and thirteen at the time. The stress was unimaginable and the trigger for my disease. In two years, I went from being a dentist, doing karate and traveling<\/span>,<\/span>\u00a0to not being able to work, drive or care for myself or\u00a0<\/span>my<\/span>\u00a0<\/span>children<\/span>.<\/span>\u00a0<\/span><\/p>\n

I suffer from extreme fatigue and severe neck and back pain due to muscle rigidity. I’m<\/span>\u00a0exhausted\u00a0<\/span>all<\/span>\u00a0the time<\/span>.<\/span>\u00a0I rarely go out and<\/span>\u00a0have lost\u00a0<\/span>help during the pandemic. I<\/span>\u00a0often feel isolated. It takes everything I have to shower, eat and parent.\u00a0<\/span>The medications are sedating and do<\/span>\u00a0not\u00a0<\/span>work well over time<\/span>, and<\/span>\u00a0I<\/span>\u00a0have<\/span>\u00a0built up a tolerance to them.\u00a0<\/span>So,<\/span>\u00a0I keep my med<\/span>ication dosage<\/span>s<\/span> low and deal with more pain;<\/span>\u00a0<\/span>it\u00a0<\/span>is\u00a0<\/span>a\u00a0<\/span>tradeoff<\/span>.<\/span>\u00a0<\/span><\/p>\n

Despite the everyday challenges I face, this disease has brought me many unexpected gifts. After being diagnosed, I quickly realized how important it\u00a0<\/span>is\u00a0<\/span>to raise awareness for SPS. I shared my story publicly in 2018\u00a0<\/span>in a\u00a0<\/span>segment on WJLA-TV<\/span>, a DC-metro area ABC\u00a0affiliate<\/span>\u00a0<\/span>.<\/span>\u00a0<\/span>I\u00a0<\/span>also started a nonprofit<\/span>,<\/span>\u00a0<\/span>The Stiff Person Syndrome Research Foundation<\/span><\/a>\u00a0to\u00a0<\/span>take action<\/span>, raise awareness and support research. I developed an advocacy section on the foundation’s website to support people navigating the diagnosis process, a media section to shine a spotlight on this rare disease and an SPS Voices section that features stories from SPS patients around the world.<\/span>\u00a0<\/span><\/p>\n

Rare\u00a0<\/span>D<\/span>isease\u00a0<\/span>D<\/span>ay\u00a0<\/span>holds a special place in my heart for two reasons<\/span>:<\/span> one, because I have one<\/span>, a<\/span>nd two, because I have made deep connections with others around the world who are also in the rare disease\u00a0<\/span>community<\/span>. We understand each other. We take each other\u2019s calls at midnight. These connections are priceless. The burden is lighter when shared<\/span>\u00a0and o<\/span>ur voices are more powerful when combined. February 28<\/span>, 2021 is a day to honor our voices together.<\/span>\u00a0<\/span><\/p>\n

I want the public to know the importance of advocacy. My diagnostic odyssey was hell. It took me\u00a0<\/span>three<\/span>\u00a0years,\u00a0<\/span>nine<\/span>\u00a0ER visits<\/span>\u00a0and\u00a0<\/span>thirteen<\/span>\u00a0specialists before I was correctly diagnosed with SPS. I was dismissed and medically mismanaged. On average<\/span>,<\/span>\u00a0it takes\u00a0<\/span>seven<\/span>\u00a0years to diagnose SPS. It took me\u00a0<\/span>three<\/span>, not because I was lucky, but because I was on a mission.<\/span><\/p>\n

At one of my earlier appointments at Johns Hopkins, my neurologist told me his clinic had been denied grant money for research because there wasn\u2019t enough research to support getting the grant money<\/span>.<\/span>\u00a0Health equity means that everyone\u00a0<\/span>receives\u00a0<\/span>the same opportunities to be healthy. We know this is not true for people in third world countries or for people with rare diseases. Just because there are fewer of us, or because our fundraising dollars are smaller, doesn\u2019t mean we are any less worthy of better\u00a0<\/span>treatments<\/span>\u00a0<\/span>or<\/span>\u00a0<\/span>a cure.<\/span>\u00a0<\/span><\/p>\n

I have a megaphone and I will be using it to show my stripes!<\/span>\u00a0<\/span>I have written an article to acknowledge Rare Disease Day for a local magazine and have submitted information that may be published in The Washington Post to spotlight rare diseases. An Australian man with SPS is currently traversing Tasmania to raise awareness for\u00a0<\/span>s<\/span>tiff\u00a0<\/span>p<\/span>erson\u00a0<\/span>s<\/span>yndrome and rare diseases. My foundation organized the event, is publicizing it<\/span>\u00a0and media from the local papers to Voice of America TV are covering it. The Stiff Person Syndrome Research Foundation will focus our monthly newsletter and\u00a0<\/span>all of<\/span>\u00a0our social media<\/span>\u00a0posts<\/span>\u00a0on support for Rare Disease Day.\u00a0<\/span>We will endorse all NORD action items, from writing to members of Congress<\/span>\u00a0<\/span>to joining the Rare Action\u00a0<\/span>Network and<\/span> encourage others to join us. Visit stiffperson.org<\/a> for more information.<\/span><\/p>\n

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

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

I was diagnosed with\u00a0stiff\u00a0person\u00a0syndrome\u00a0(SPS) on a Monday night in October of 2017. The impact\u00a0of\u00a0my condition\u00a0on my life has been tremendous. My symptoms started after I lost my former husband to … <\/p>\n

Continue reading \u00abTara Z\u2019s Story in Honor of Rare Disease Day\u00bb<\/span><\/a><\/p>\n","protected":false},"author":47,"featured_media":13094,"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":[192,505,1827],"tags":[2099,1764,1373,219,2663,2662,2660,2661],"class_list":["post-59250","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patients-members","category-patient-stories","category-rare-disease-day","tag-diagnostic-odyssey","tag-johns-hopkins-medicine","tag-johns-hopkins-university-school-of-medicine","tag-rare-disease-day","tag-sps","tag-stiff-person-syndrome-research-foundation","tag-stiff-persons-syndrome","tag-wjla-tv"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59250","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\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59250"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59250\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/13094"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59250"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59250"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59250"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}