The multiple pterygium (or pterygium) syndrome is an extremely rare genetic disease. Its prevalence is less than one birth in a million. The age of onset of the disease is at the stage prenatal, neonatal or in infancy.
What are the symptoms ?
Multiple pterygium syndrome is characterized by facial abnormalities, short stature, vertebral defects, joint contractures, and thickening (pterygium) of the neck, elbows, knees, armpits, fingers.
What daily life?
Starlet Kizogluinterviewed by our colleagues from Yahoo, confided in her life with multiple pterygium syndrome.
Stellina is now 31 years old and 1.30 meters tall. “Since I was born, I was a little smaller than the others. I quickly developed scoliosis that made me look like Quasimodo. »
At four years old, Stellina had to stay in a rehabilitation center: “An iron bar is placed in my back with a halo, screws at the level of the head to straighten the spine. »
Despite her handicap, Stellina goes to school, makes friends thanks to her great strength of character. However, she cannot do a discovery internship in third grade.
Serious respiratory problems during adolescence required her to undergo a tracheotomy.
Being a woman and disabled
Despite all the difficulties that Stellina encounters, she remains a fighter and wants to give courage to all people with disabilities. “I assume myself despite my handicap. I put on make-up, I go on vacation (…). You must not lose self-confidence. We are all jewels, creatures of God. We have our differences but we are all beautiful at our level. There are no ugly people on this earth. Beautiful words that we should all remember…
