Jenny Parinos Recalls XLH Diagnosis and Childhood
Paralympic table tennis player saw 19 doctors before discovering a rare genetic condition and beginning daily supplementation.
Paralympic table tennis player Jenny Parinos looked back on her journey toward being diagnosed with X-linked hypophosphatemia (XLH). The athlete detailed a childhood marked by frequent medical visits, adapting to intensive treatments, and finding a turning point through sports and therapy.
The high-performance athletic journey of Jenny Parinos began long before her first table tennis matches: it started in childhood with the search for answers regarding a rare congenital condition. The only one of four siblings born with the disability, Jenny lives with X-linked hypophosphatemia (XLH), a genetic disorder that directly impairs mineral absorption and bone development.
A journey through 19 doctors before diagnosis
The first signs appeared around age one, when the athlete began attempting to walk and frequently rested her hands on her knees for support. Her motor difficulties prompted a long search across 19 orthopedic specialists. However, the responses were almost always evasive, attributing her condition to a normal variation in developmental milestones. Jenny even wore corrective orthopedic boots with no noticeable improvement.
The turning point arrived through a recommendation from a friend of her mother, Mônica, who suggested an evaluation at Santa Casa de São Paulo. It was there that the medical team finally diagnosed XLH. The condition is caused by the body's inability to properly retain calcium and phosphorus: even with a balanced diet, the minerals are not absorbed effectively and are excreted in the urine.
Medical routine, surgery, and growth
With the diagnosis confirmed, Jenny began intensive treatment at a very young age. To replace the constant mineral loss, her daily routine required taking 16 supplement pills spaced out every four hours. Because her bone structure was softer due to the calcium deficiency, bearing her body weight caused her legs to bow. At age 10, she underwent corrective surgery, but the procedure did not yield the intended results.
Because XLH affects skeletal growth, the athlete also received growth hormone therapy throughout her childhood and adolescence, reaching her adult height of around 5 feet (1.53 m). Despite the bone fragility associated with the condition, rigorous medical follow-ups and attentive family care helped her avoid fractures throughout her life.
Overcoming insecurities, sports, and new horizons
Beyond physical care, living with XLH posed emotional challenges during her school years. At age 10, facing prejudice due to her bowed gait caused deep insecurities. The transformation in her self-image came with maturity, supported by psychotherapy and her arrival in the Paralympic community, where being around diverse bodies and experiences reshaped her understanding of capability.
That ongoing process of breaking barriers continues: at age 30, inspired by the races competed in by her husband, Kilian, Jenny overcame the long-held belief that she needed straight legs to run. Today, she has integrated running into her training routine, acquired a bicycle, and is setting her sights on future challenges in triathlon and swimming.