North Haven woman helps establish annual awareness day for rare bone condition

North Haven woman helps establish annual awareness day for rare bone condition

Record-Journal

The first annual day of awareness in Connecticut, in recognition of Fibrodysplasia Ossificans Progressiva, is set for Sunday, Nov. 26. FOP is an ultra-rare genetic bone condition that affects only two people in Connecticut: Holly LaPrade of North Haven and Jasmin Floyd of Danielson.

Senate Republican President Pro Tempore Len Fasano and state Rep. Dave Yaccarino, both of North Haven, applauded LaPrade for her efforts advocating for the day of awareness. Her advocacy resulted in the Connecticut General Assembly passing legislation to designate every Nov. 26 as Fibrodysplasia Ossificans Progressiva Awareness Day to raise public awareness for the rare connective tissue disease.

Although FOP is extremely rare, the discovery of a cure could lead to better understanding and treatment of more common conditions that affect millions of people worldwide including osteoporosis, fractures, hip replacement, heterotopic ossification that occurs in trauma and burn victims and other bone-related disorders.

In 2016, LaPrade began the process of sharing her story with lawmakers at the State Capitol. This summer, the day of awareness was made official with the passage and signage of Public Act 17-204.

The primary goal of initiating a day of awareness for FOP is to call much-needed attention to the disorder. Few doctors encounter it in medical school. As a result, misdiagnosis has caused pain and suffering for patients and families worldwide. By better educating physicians and healthcare workers, advocates hope that misdiagnoses will not occur in the future.

FOP is one of the rarest, most disabling genetic conditions known to medicine and causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.

For more information, visit http://www.ifopa.org/


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