{"id":59292,"date":"2021-10-15T13:06:54","date_gmt":"2021-10-15T17:06:54","guid":{"rendered":"https:\/\/rarediseases.org\/from-a-horse-to-a-zebra-danas-rare-disease-story\/"},"modified":"2021-10-15T13:06:54","modified_gmt":"2021-10-15T17:06:54","slug":"from-a-horse-to-a-zebra-danas-rare-disease-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/from-a-horse-to-a-zebra-danas-rare-disease-story\/","title":{"rendered":"From a Horse to a Zebra: Dana\u2019s Rare Disease Story"},"content":{"rendered":"

I was five years old, excitedly cheering on my mother at her softball game at City Park ball fields in Fort Collins, Colorado. She hit the ball and I jumped and cheered with the others in the bleachers. Then, my life changed. I slipped and fell through the bleachers. Climbing back up, lifting my pant leg, the tear in my shin was horrifying. Off to the first of what would soon be more trips to the ER than I can remember.\u00a0<\/span>\u00a0<\/span><\/p>\n

At the ER, doctors scratched their heads as they tried to stitch the skin back together, but it just continued to tear. Thank goodness one of the doctors there had been keeping an eye on me and some of my previous bruising incidents. He realized this was abnormal and somehow thought to use the mattress stitch. It seemed from that moment on, my life was a series of bruises, ace bandages and stitches. We couldn’t go anywhere that didn’t have a hospital nearby! Although I was diagnosed at age five, I did not become aware of the impact Ehlers-Danlos syndrome had on daily living until I was 48.<\/span>\u00a0<\/span><\/p>\n

There was another instance where I remember I was so excited for a special trip to ride a train. Getting on the train, my foot slipped, the stair front caught my shin, and there we were again! The train ride would’ve been too long with a cut like that, so a kind bus driver let my dad and I squeeze into a full bus, front seat so I could prop my leg up. My mom rode the train by herself and caught up to us at the hospital. There are so many stories like that that I could write them forever.<\/span><\/p>\n

There was also the bendy body, which made me\u00a0the talk\u00a0of\u00a0the school! I could twist my arm all the way around, my legs and arms bent backward\u00a0and\u00a0could push my thumb back to my wrist. About this time\u00a0also\u00a0came\u00a0the\u00a0dreaded\u00a0shin\u00a0guards\u00a0– how could the new kid at school try to blend in with big,\u00a0bulky shin guards on? My parents\u00a0couldn’t\u00a0stand to see me get more\u00a0stitches,\u00a0so they had special skin guards designed to protect me\u00a0physically, but emotionally there was really nothing that saved me.\u00a0I was teased\u00a0and\u00a0poked, even\u00a0by\u00a0my teachers.\u00a0I remained known as the squishy girl who bruised easy, nicknamed,\u00a0\u201cSquish\u201d\u00a0and\u00a0\u201cBruiser\u201d.\u00a0At age\u00a0twelve,\u00a0thoughts of suicide were slipping in, then came alcohol,\u00a0which\u00a0led to several trips for more stitches.\u00a0<\/span>\u00a0<\/span><\/p>\n

My poor parents\u00a0received\u00a0so many\u00a0late-night\u00a0calls\u00a0about my injuries.\u00a0It had to be awful to get so many of those calls from a college student a full state away.\u00a0Yet somehow,\u00a0I bumbled through\u00a0and\u00a0received\u00a0a BA in education.\u00a0A year out of college, alcohol quit working,\u00a0Ehlers\u00a0kept being\u00a0Ehlers\u00a0and I got sober\u00a0and joined a sober softball league.\u00a0I\u00a0got less clumsy as well,\u00a0as\u00a0stitches came less often, but were replaced over time by herniated discs, torn Achilles, out of joint\u00a0hips\u00a0and\u00a0lots of aches and\u00a0pains. Finally, at\u00a0around the\u00a0age\u00a0of\u00a042, I\u00a0took a ball to the\u00a0face;\u00a0my stitch free streak was a strikeout!\u00a0I had to get\u00a014 stitches between\u00a0the\u00a0eyes.\u00a0As\u00a0I’ve\u00a0trudged through the past few years,\u00a0I have\u00a0suffered fatigue, panic, anxiety, no\u00a0sleep\u00a0and\u00a0migraines.\u00a0A doctor\u00a0sent me to therapists\u00a0and\u00a0gave me\u00a0anti-anxiety\u00a0meds,\u00a0but\u00a0nothing was relieving any of it.\u00a0<\/span>\u00a0<\/span><\/p>\n

One day a Pinterest pin popped up\u00a0showing\u00a031 facts about Ehlers-Danlos.\u00a0As I read,\u00a0answers came flooding to me.\u00a0The doctors that diagnosed my dad and I were looking retired, and to the doctor\u00a0I was a horse, not a zebra. So, the past two years have been rediscovering all about\u00a049-year-old\u00a0me!\u00a0I have\u00a0found a doctor that is well\u00a0versed\u00a0in\u00a0Ehlers and\u00a0am\u00a0taking\u00a0Plaquenil\u00a0for fatigue relief.\u00a0<\/span>\u00a0<\/span><\/p>\n

As life brings\u00a0changes,\u00a0I\u00a0continue to discover more symptoms and finally some medical professionals who listen and get it.\u00a0The past couple\u00a0of\u00a0years\u00a0have\u00a0also\u00a0really increased my ability to reach out and ask for help.\u00a0I was directed to a\u00a0nurse practitioner\u00a0in the mental health department\u00a0who\u00a0prescribed quetiapine,\u00a0extended-release\u00a0medicine\u00a0that not only allows me sleep, but also controls\u00a0daytime\u00a0anxiety\u00a0and has been amazing.<\/span>\u00a0<\/span><\/p>\n

I’m\u00a0in a Beachbody workout group,\u00a0can do some weights\u00a0and\u00a0yoga (the super bendy part of Ehlers make for some freaky looking yoga poses!).\u00a0I will\u00a0be going to a\u00a0physical\u00a0therapist\u00a0(who has Ehlers)\u00a0in hope of\u00a0finding\u00a0ways to relieve thumb joint pain.\u00a0I invested in a thumb brace recently, and\u00a0at the end of\u00a0my day of teaching\u00a0online,\u00a0I wear it and it\u00a0provides\u00a0tremendous relief.\u00a0Now\u00a0I’m\u00a0here\u00a0in\u00a0the present moment, finally able to use\u00a0my knowledge and experience\u00a0as a springboard\u00a0to become\u00a0better!<\/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 five years old, excitedly cheering on my mother at her softball game at City Park ball fields in Fort Collins, Colorado. She hit the ball and I jumped … <\/p>\n

Continue reading “From a Horse to a Zebra: Dana\u2019s Rare Disease 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":[192,505],"tags":[2772,2768,2770,2767,2176,2771,2769,2417],"class_list":["post-59292","post","type-post","status-publish","format-standard","hentry","category-patients-members","category-patient-stories","tag-anxiety","tag-ehlers-danlos","tag-odyssey","tag-patient","tag-patient-story","tag-stitches","tag-symptoms","tag-vascular-ehlers-danlos-syndrome"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59292","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=59292"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59292\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59292"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59292"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59292"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}