Living With A Rare Disease: The Strength of Family

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Worldwide, there are between 5,000 to 7,000 rare diseases in existence. For those living with a rare disease finding access to proper care or an appropriate network of support can pose a significant challenge. Today there are many different organizations and personal advocates working towards increasing awareness of rare disease. For Laura Rossano, master’s degree candidate in rehabilitation counseling and rare disease advocate, 23; the challenging experience of living with fibrodysplasia ossificans progressiva (FOP) has allowed her to reach out and touch others both inside and outside of the rare disease community.

Ever since her first flare-up in Kindergarten, the fibrous tissues (muscles, ligaments, tendons) in Laura Rossano’s body have been progressively turning to bone – forming a ‘second skeleton’ around her body. This second skeleton is the result of fibrodysplasia ossificans progressiva (FOP), a rare genetic disease, which causes uncontrollable bone growth resulting in extremely restricted mobility and paralysis.  FOP is extremely rare with only 700 confirmed cases around the world.

Even though Laura’s first flare-up was in Kindergarten, her FOP remained relatively dormant until she hit puberty.  Almost overnight Laura went from a physically active middle schooler to wheelchair bound.  Laura recalls “going to bed one night, falling asleep on [her]arm and waking up in the morning with [her]arm frozen in the same position as when she fell asleep.”  Despite the rough teenage years to come, Laura never let FOP stop her from having what she calls a “normal life.”

Despite the additional bone growths that have caused Laura to be primarily wheelchair bound, Laura has found success in many arenas.  A master’s student at Hofstra University, Laura is working towards her degree in rehabilitation counseling and works with local teenagers in helping them overcome adversity and graduate high school.  In addition to her degree work, Laura helps raise awareness for FOP by speaking to different medical professionals and students about her journey with FOP.  Outside of counseling and advocacy work, Laura is also an accomplished poet.  This strength and personal diversity Laura credits entirely to her family; “My family never treated me differently.  My older brother graduated high school, so did I.  He went to college, so did I.  He graduated college, I did that too.  Just because I have FOP and my body makes things harder, that doesn’t mean I shouldn’t live life to the fullest.  That is the message  I have for people; sure having FOP is difficult… I have had my dark periods – but I will not let my body stop me from doing what I want to be doing with my life, what my family wants for me.  My family has always been by my side and has given me the strength to pursue my interests and succeed in school.  I don’t want to sit and feel sorry for myself, its a waste of time… I’ve gone to class directly after IV treatments and my professors would ask why I was in class or tell me I didn’t have to be there, except I wanted to be there.  I don’t want my FOP to stop me…”

To learn more about Laura’s battle with FOP you can read her poem Ribbons here. To learn more about FOP and how you can get involved visit the International Fibrodysplasia Ossificans Progressiva website.

To learn more about rare diseases and how you can help raise awareness visit The Global Genes Project or Rare Disease Day.

If you would like to share your rare disease story with Recombine, you can e-mail us here.

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About Author

Stephany Foster

Stephany Foster is the Associate Scientific Writer at Recombine, a genetic testing company based in New York City. She writes on topics spanning fertility, reproductive medicine, and recent advances in genomics. Stephany also writes about recently published research that Recombine presents at conferences and meetings around the globe. Before joining Recombine, Stephany interned at the George Church Lab at Harvard Medical School. She graduated from Brown University with an A.B. in Biology in 2014.