{"id":59765,"date":"2024-12-16T12:19:07","date_gmt":"2024-12-16T17:19:07","guid":{"rendered":"https:\/\/www.bu.edu\/dental\/?p=59765"},"modified":"2024-12-16T12:19:07","modified_gmt":"2024-12-16T17:19:07","slug":"gsdm-patient-seminar-series-osteogenesis-imperfecta-2024","status":"publish","type":"post","link":"https:\/\/www.bu.edu\/dental\/2024\/12\/16\/gsdm-patient-seminar-series-osteogenesis-imperfecta-2024\/","title":{"rendered":"\u201cSee the Possibilities of Every Human Being:\u201d Osteogenesis Imperfecta Patient Shared Personal Stories about her Provider-Patient Relationships, Adoption, and Ableism during the Latest GSDM Patient Seminar Series"},"content":{"rendered":"

Disclaimer: The content in this article is <\/span><\/i><\/b>for educational purposes only and is not medical advice, diagnosis, or treatment.<\/span><\/i><\/b>\u00a0<\/span><\/p>\n

Tracy Mulroy was born with a broken rib, broken leg, and a slim chance of survival. Now 55 years old, Mulroy–a patient with Osteogenesis Imperfecta (OI)–spoke to the GSDM community in September about how she defied the odds throughout her healthcare journey. Mulroy presented as part of the GSDM Patient Seminar Series.\u00a0<\/span>\u00a0<\/span><\/p>\n

OI is a lifelong genetic bone disorder with eight variants with symptoms ranging from mild to severe. Mulroy is diagnosed with Type III, the second most severe OI variant. She is 3 feet 6 inches tall and must use an electronic wheelchair scooter full-time\u2014but OI hasn\u2019t stopped her from achieving her dreams. Mulroy said she determined to not let OI stop her from living her life to fullest: She learned to drive, graduated magna cum laude from Georgetown Law School, and adopted two children.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cDoctors predicted when I was born that I wouldn’t even be able to dress myself and told my parents to institutionalize me,\u201d Mulroy said. \u201cDoctors, no offense intended to any of you, you don’t have crystal balls. You’re not Gods. I tell this story as a way of imploring you to see the possibility of every human being that you’re treating because you never know.\u201d<\/span>\u00a0<\/span><\/p>\n

Mulroy said it was \u201cnearly impossible\u201d for her parents to find support and resources. Her family lived around an hour away from Maryland\u2019s <\/span>John Hopkins Medicine<\/span><\/a> where an orthopedist who specialized in dwarfism was willing to take Mulroy as a patient. Throughout her childhood, she had multiple surgeries and was in physical therapy to help her be able to walk. She said her medical team had a goal of allowing her to walk, but it wasn\u2019t her goal. She was in constant immense pain and at age 11, she decided walking without any aid wasn\u2019t for her.\u00a0<\/span>\u00a0<\/span><\/p>\n

She said she was afraid to tell her medical team her wishes, but she knew she couldn\u2019t continue with these surgeries. From that moment on, she used a wheelchair and then eventually an electric scooter.\u00a0 <\/span>
\n<\/span><\/p>\n

\u201cI learned to adapt as someone who lives using wheels for my mobility,\u201d Mulroy said. \u201cIs it a bummer that sometimes I can’t walk? Of course it is, but I’ve never known any different and it really has not held me back from very much.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Her physical wellbeing has continued to be in flux, including broken bones\/ fractures, brittle\/discolored teeth, and two heart attacks. While she recognizes that she has easier access to healthcare in general, she constantly struggles with finding the proper rare disease care.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cIt’s really, really hard to find competent care as an adult with a rare disease,\u201d Mulroy said. \u201cI am literally walking distance from [National Institutes of Health] and an hour from Johns Hopkins. I am in this incredibly medically rich area, and I have a very hard time finding competent medical care. For people in more remote areas, I do not know what they do.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Mulroy has not let her physical limitations prevent her from having a personal life. She discussed how she and her ex-husband (who has type four OI) struggled to adopt two children through international adoption. Mulroy said they were not allowed to adopt a \u201chealthy\u201d child, and they had to fight to be able to adopt their two children, their son with type one OI and their daughter with fetal alcohol syndrome.<\/span>\u00a0<\/span><\/p>\n

\u201cMy children both have struggles that have been really hard and some of those are related to their parents’ disability,\u201d Mulroy said. \u201cI’ve almost died a few times and, and they’ve already been abandoned once. It hasn’t been easy, but I feel extremely blessed to have both of them in my life.\u201d\u00a0<\/span>\u00a0<\/span><\/p>\n

Lastly, Mulroy spoke about how the prejudice and ableist thoughts she\u2019s encountered from some medical professionals have left her anxious about the quality of the care she was receiving. She said she is constantly fighting against harmful stereotypes, misconceptions, and generalizations about herself and others with disabilities.\u00a0<\/span>\u00a0<\/span><\/p>\n

Mulroy made clear that she is not defined solely by her medical condition. Mulroy asked those in attendance to never forget that they are treating humans\u2014not diseases.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cIgnorance and ableism in our society is bad, but what I [sometimes] see in healthcare settings–where I expect it to be better–it’s actually worse, much worse and it’s pretty staggering,\u201d Mulroy said. \u201cAs a reminder, you’re treating a person and, whether they’re disabled or not, they’re a person with just like you.\u201d<\/span>\u00a0<\/span><\/p>\n

 <\/p>\n

By<\/em>\u00a0<\/span>Rachel Grace Philipson<\/a><\/p>\n

 <\/p>\n

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

Tracy Mulroy, a patient with Osteogenesis Imperfecta (OI), spoke to the GSDM community in September about how she defied the odds throughout her healthcare journey as part of the GSDM Patient Seminar Series.<\/p>\n","protected":false},"author":21998,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[13840,13880,13839,13837],"tags":[],"_links":{"self":[{"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/posts\/59765"}],"collection":[{"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/users\/21998"}],"replies":[{"embeddable":true,"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/comments?post=59765"}],"version-history":[{"count":4,"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/posts\/59765\/revisions"}],"predecessor-version":[{"id":59772,"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/posts\/59765\/revisions\/59772"}],"wp:attachment":[{"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/media?parent=59765"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/categories?post=59765"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.bu.edu\/dental\/wp-json\/wp\/v2\/tags?post=59765"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}