Ashley Kurpiel is a 35 years old young lady who suffers from Fibrodysplasia Ossificans Progressiva (FOP). It is a genetic disorder that turns the body muscles into bone. With this disease, she lost her right arm and the movement in her leg.
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Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest most disabling genetic problems. The Fibrodysplasia Ossificans Progressiva affects nearly 800 people worldwide. It results in death when the cartilage holding the ribs together also solidifies, making it impossible to breathe. The symptom of this disease is solidification of muscles and their turning into bones and thereby making humans paralyzed. Many others living with this disease lose all mobility from head to toe.
No one knows for how long she will be capable of moving her limbs. She lost her arm when she was just 2 years old and at the age of 25, she lost mobility in her right leg. She loves to meet so many amazing people, especially the Dalai Lama and attends many events and talks to other people who are suffering.
She spends her lot of time on social media answering messages that the people usually send her regarding FOP. She tries to help as many people as possible who are suffering with this desease. She always looks for positive side and rarely gets depressed?
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In terms of her current mobility, Kurpiel says that she has limited movement around her neck, she can only walk for short distances, because her hips and thighs are fused and she cannot raise her arm normally. If someone touches Kurpiel’s back, it would appear like a rock. After suffering from this disease she feels, she is in a unique position and works to raise awareness in communities.