There are such a group of children in the world,
Known as the children of the moon,
They are angels who descend on earth,
It's fireworks of different colors,
It was the beautiful white moonlight in front of the window
They are albinism patients.
13 June is the International Albinism Day of Care.
Relevant data show that the incidence of albinism worldwide is 1 in 17,000. In normal people, the carrier rate of albinism-causing genes is about 1/65. Children with albinism are easily discriminated against and incomprehensible by the world because of their special appearance. They are eager for more care from society and want to enjoy fair treatment.
What is albinism?
Albinism is a hereditary leukoplakia caused by melanin deficiency or disorders of the skin and accessory organs caused by tyrosinase deficiency or decreased function. Simply put, it is a type of genetic disease caused by mutations in certain genes that control pigment production. Because such patients are more photophobia and feel more comfortable when they are nocturnal, they are called "children of the moon".
As a genetic disease, the only way to prevent albinism is to have early prenatal genetic testing to avoid genetic defects.
Albino babies are often accompanied by macular fovea dysplasia and abnormal optic nerve pathways, causing involuntary eye swings, inability to focus the line of sight normally, and it is difficult to calmly look at people.
How to protect an albino baby?
1. Avoid strong sunlight on the skin. You can wear a sunhat and long-sleeved pants to reduce outdoor activities in bright light, thereby reducing the possibility of solar dermatitis and even skin cancer.
2, eye protection to do two things.
(1) Light protection. This is very important for albino babies, in order to prevent these children's eyes from being damaged by the ubiquity of light damage in the environment, professional three-level protective measures need to be taken:
First-level protection refers to eye protection measures under indoor lighting, for which the special eye disease baby mentioned above needs to wear color-changing glasses indoors, of which brown can be 100% ultraviolet protection, filtering out a large amount of blue light, gray can absorb infrared and 98% ultraviolet light. The advantage of color-changing mirrors is that they can have a certain diopter, so they are helpful for vision correction at the same time, but when the diopter is too high, they cannot customize color-changing mirrors, so they use light protection lenses or coatings for indoor light protection;
Secondary protection refers to eye protection in outdoor sunlight. The light intensity of sunlight is much larger than the intensity of ordinary indoor lights, and the ultraviolet radiation is large, so it is necessary to wear sunglasses, but the level of sunglasses and the method of giving glasses need to be selected according to the light biophobia index, diopter and eye disease of each child. Our imported sunglasses are divided into four different levels of protection according to their light transmittance, among which less pigmented type 1 albinism, retinal cell dystrophy, photophobia index, cataract surgery children, at least 3-4 levels of protection, other general children can use 1-2 levels of protection. All four levels of sunglasses are 100% UV protection, using polarized lenses and filtering blue light, with the largest protection index, which can fully protect the eyes from strong light (long-wave, medium-wave and short-wave ultraviolet rays) and harsh daylight.
Three-level protection refers to the special population outdoor strong light, in addition to wearing sunglasses or can not meet the needs of safety protection, the need to match the sun hat with a large brim, to achieve 360 ° ultraviolet protection, while the need to strictly control the exposure time of outdoor sunlight, and avoid direct light.
(2) Early diagnosis and early intervention. Another important precaution for albino baby eye protection is early eye screening, early eye care, early visual rehabilitation: albino babies have amblyopia, refractive error, strabismus, nystagmus and fundus disease-related diseases The incidence is very high, so it is necessary to carry out standardized eye examination in the early stage of birth, or even within three months, from refractive, visual development and fundus retinal function to evaluate, in order to carry out related intervention and treatment as soon as possible. Avoid losing the earliest and best treatment time, which makes it very difficult for the child to treat in the later stages.
How is it treated?
For albinism, there is basically no potential effective treatment regimen that can cure the disease. The goal of treatment is to alleviate symptoms, mainly to protect the skin and eyes from the sun. A recent clinical study by the National Institutes of Health showed that the drug nitisinone can increase melanin production in some patients with type 1B ocular cutaneous albinism (OCA-1B), which may be a boon for the treatment of patients with albinism.
For ocular abnormalities caused by albinism, such as nystagmus and low vision, it is still impossible to completely cure them, and can only be improved through surgery and comprehensive treatment. To this day, nystagmus is still known as a refractory disease, and the old view that nystagmus cannot be treated has led many children with albinism to miss the optimal time for surgery, and the conventional concept of surgical treatment has led to a high recurrence rate. However, in the development of medical technology for more than a decade, especially in the study of eye movement mechanisms, Nystagmus has entered a new era.
President Yang Dongsheng of Preliang Kang has focused on the research and clinical practice of nystagmus for 20 years, and after thousands of cases of nystagmus surgery, the following surgical concepts are proposed for different patient situations:
1. Based on the concept of shock absorption, the compensatory head position arises from the eye shock, as long as the eye shock weakens, the compensated head position measurement is naturally reduced.
2. The concept of early surgery for nystagmus, nystagmus is reduced, children's visual development is affected and reduced, and vision is naturally well developed.
3. The concept of shock absorption plus abnormal head joint surgery effectively solves the drawbacks of simple head surgery that is easy to recur;
4. The concept of nystagmus strabismus head position combined surgery, this one-time surgery, avoids the risk and trauma of multiple surgeries;
5. Adjustable sutures and minimally invasive surgery under the microscope are used to make the surgery delicate and precise.
6. The concept of full confidence in the treatment of adult nystagmus and vision improvement has yielded many unexpected gains.
Helping albinism patients has always been a constant task of Prion
President Yang Dongsheng and President Wang Ping of Shandong Puruiliangkang Eye Hospital, as international authoritative experts in the field of nystagmus treatment, have continued to care for and treat people with albinism for many years, and use international advanced diagnosis and treatment concepts to help children with albinism nystagmus improve their symptoms and restore their functions.
Among the more than 20,000 cases of nystagmus patients they diagnosed and treated, a large proportion of them were children with albinism nystagmus, who traveled countless times around the country to consult patients, brought them light through treatment, gave albinism patients and parents encouragement and confidence, and helped children return to normal life.
"5-year-old albino baby orange, when looking at things, the eyeballs can not stop like a "pendulum". The parents took her to see President Yang, and after receiving the surgery, the child's head position improved significantly, the eye swing amplitude decreased, and the vision also improved."
"An 8-year-old girl with generous introvertia in both eyes, due to severe nystagmus, was diagnosed by the provincial hospital as: unable to be cured. The nystagmus shock reduction and estrotropia correction + darkroom therapy designed by Dean Yang not only greatly improved after the operation, but also amazingly obtained stereoscopic vision."
The albinism and nystagmus science popularization campaign has been launched
From June 15th to June 16th, Shandong Puruiliangkang Eye Hospital and Taishan Xiaohe Public Welfare jointly launched the "Moon Baby Fusion Tour" activity of the Albinism and Nystagmus Science Popularization Public Welfare.
On June 15, at 19:00 on the evening of June 15, the albinism and nystagmus science popularization lecture will be carried out, President Yang Dongsheng and President Wang Ping will answer questions for patients on the spot, and the on-site lecture will be broadcast live simultaneously (for live broadcast, please pay attention to the WeChat public account of Shandong Puruiliangkang Eye Hospital)
On June 16, Prielian will provide various examinations and expert consultations for participating albino babies.
The Care for the "Children of the Moon" campaign will continue forever. Prielian Kang also appeals here, hoping that the whole society will jointly care for children with albinism, so that these "moon babies" can enjoy the same rights and interests as other children and grow up happily!
The content of this article is published by the author of One Point and does not represent the position of Qilu One Point.