ABOUT US

"Dense deposit disease (DDD) is a condition that primarily affects kidney function. The major symptoms of DDD are due to kidney malfunction, and often include proteinuria; hematuria; reduced amounts of urine; low levels of protein in the blood; and swelling in many areas of the body. DDD can have genetic or non-genetic causes. It can be caused by genetic changes in the C3 and CFH genes. DDD may develop as a result of both genetic risk factors and environmental triggers. It can also result from the presence of autoantibodies that block the activity of proteins needed for the body's immune response. Most cases are occur by chance in people with no history of the disorder in their family." from nih.gov

Ashley Ames (AA) was 9 years old when her dad noticed swelling on her ankles.  She was taken to the doctor the next morning and kidney problems were immediately suspected. By God's providence, AA's pediatrician had previously studied pediatric nephrology under the current expert on DDD. A biopsy on February 9, 2015 confirmed the suspicions and the diagnosis of Dense Deposit Disease was given. Although it was unexpected, steroids and MMFs kept the disease at bay for over 2 years.  Once AA had gone through a growth spurt, a biopsy showed that the disease had progressed so new medication was needed.    She started eculizumab infusions every other week in 2018.  This medication is extremely expensive. A new dosage was introduced and in 2020 AA started ravulizumab infusions every 8 weeks.