Marley's Journey with HPP
Marley, a junior at Owensboro High School in Daviess County, KY was recently diagnosed with a rare genetic disease, Hypophosphotasia.
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24/10/2020
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Marley's Timeline to Diagnosis
January 2020- Marley was taken to OSMO for pain in her hands and wrists. Her family thought possible Carpel Tunnel because she plays flute, piano, piccolo, and other percussion instruments for OHS Band. Lab work was ordered.
February 2020- Marley's lab work was red flagged and she was referred to Dr. Schmidt at Norton's Children's Hospital in Louisville, KY. Dr. Schmidt noticed substantial advancement in Marley's Scoliosis and that she now had a 3rd curve. Marley's neck area curvature measured 40 degrees, mid back measured 47 degrees and lower back was 20 degrees. More lab work was ordered.
April 2020- Marley was referred to Dr. Star Nixon an Orthopedic Surgeon at Norton's. She diagnosed Marley with HPP, a Connective Tissue Disorder, and as for now unnamed Autoimmune Disease.
May 2020- Dr. Nixon prescribed Marley Strensiq, an injection taken 3 times a week for the rest of her life to help strengthen her bones. When Marley's Mom (Leslie Simmons) called Kroger's to see how much the medication would cost, she found out that it is $200, 000 a MONTH! Insurance denied payment
Marley was assigned to Genetics Specialist and Counselor. They began Genetic Testing.
June 2020- An X-ray of Marley's kidneys showed they are functioning normally, which was fortunate because HPP often causes kidney issues. An MRI of her spine was performed.
July 2020- Marley was sent to an Eye Specialist at Norton's and they found her vision has worsened, which is another side effect of HPP. Genetics Testing was performed.
August 2020- Marley and her family are waiting for Genetic Testing results in order to be assigned a Case Manager to help navigate insurance issues. Our hope is to find a way to get the medication she needs.
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