There is such a group of children,
They had tumors of various sizes on their faces and bodies
They are known as "Bubble Babies"
Behind the "bubbles".
Is it pain, deformity, disfigurement, or even life......
And it all stems from a rare and hereditary disease
Neurofibromatosis
Today is the World Neurofibromatosis Care Day, and Beijing Satellite TV's "Life" has reported on many neurofibromatosis patients.
22-year-old Dandan is a "bubble girl" covered with thousands of tumors like "bubbles". For many years, Dandan was "bitten" by tumors all over his body, and the pain was so painful that he could only kneel on the bed with half paralysis, and he couldn't even twist his neck freely.
9-year-old "Little Stone" has a giant tumor weighing 3 pounds on his neck, and the special location of the tumor affects the breathing of "Little Stone", in addition, Little Stone's left arm presents a strange black-gray color, the surface of the skin appears very rough, and what is even more incredible is that the skin is covered with dense small tumors, so that the left arm has become abnormally thick, almost twice as large as the right arm. Not only that, but there are tumors of various sizes in the thoracic cavity, skull, and cervical vertebrae of small stones.
Both Dandan and "Little Stone" suffer from a rare disease called neurofibromatosis type I. Tumors will grow randomly in them, when and where they appear, whether they will invade organs or worsen, and what the final effects will be are unpredictable from person to person. Tumors of different sizes are scattered all over the body, like "bubbles", so children with neurofibromas are often called "bubble babies".
Because neurofibroma type I is an autosomal dominant disorder, children are more likely to develop the disease if one parent has the disease. It occurs in 1/3000 neonates worldwide, mostly from early childhood, and the early manifestations are café au lait spots on the skin, abnormal bone development, etc.
For a long time, a steady stream of stinging pain wrapped around their small bodies, struggle and endurance, surgery and treatment, fate played a huge joke on them, but they raced against death. According to experts, there is no cure for neurofibromatosis. Excision, recurrence, re-excision, and recurrence are the nightmare cycles that neurofibromatosis patients like Dandan and Little Stone have to face every day, and targeted surgical treatment is still an effective way to improve their quality of life.
Many "bubble babies" are affected by the disease, manifested as impaired appearance, disability, deformity, etc., because the public does not know much about this rare disease, everyone's strange gaze, discrimination and isolation have shrouded their already difficult lives in a deeper haze. In fact, neurofibromatosis is not a contagious disease, and normal human contact with patients does not have any physical effects. This is also the meaning of the establishment of World Neurofibromatosis Care Day, that is, to let the rare be seen, so that the "bubble babies" can have the opportunity to get out of the haze, be seen, respected and cared for.
With the continuous advancement of medical technology, the future treatment direction of neurofibromatosis will be more diversified and personalized, bringing better treatment options to the "bubble babies", so as to continuously improve their quality of life.
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