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"Although born without iris, this did not prevent me from acquiring a master's degree in social work, actively interested in the badociated innovations treatment of this disease, and later, aniridia. the education of people with this disease, "- says Vida Jočienė.
" As long as I was a little girl, I did not understand that I was very bad, I just wore glbades that did not improve my vision and lived my child's life. But when I was a teenager, I noticed that it was getting harder and harder to read text – from black, glossy letters were turning gray, whitish, blurry. My parents thought I had a bad vision because I did not want to learn, but day after day, the rise was getting worse and I could not read any text anymore. After a lengthy teenage counseling and proof that she needed an ophthalmologist's consultation, she underwent eye examinations, concluding that cataract surgery was necessary. She saw the world of Vida more than ever before.
"I was not able to tell the sensation of scratching the wall and the face of my teenager after feeling the stomach after the surgery.A few years later, the same operation was waiting another eye Subsequently, a secondary cataract was diagnosed, then a laser treatment was applied, again various painful procedures.This lasted until the day my mistress, my blind friend, whose daughter also found aniridia, looked at my eyes and pronounced this diagnosis.So, at the age of 16, I learned this word and its meaning, not only me, but my son ", – woman is remembers.
Aniridia, according to the doctor's ophthalmologist at the Rare Ophthalmology Clinic, Kaunas Clinic. Rasos Liutkevičienė means irradiation in sight. "It is a rare conbad pathology that manifests itself in varying degrees of total or partial iris absence.These people also have cataracts, glaucoma, dislocation of the lens, descent of eyelids, optic nerve hypoplasia Patients with isolated aniridoid form have weakened urine, sometimes behavioral and developmental disorders, growth retardation, anxiety syndrome, sleep disorders and other badociated symptoms damage to the nervous system
can be determined up to the age of 3 months, in exceptional cases up to 1 year, because before that date all children must be examined by a Ophthalmologist for children. "Unfortunately, the child is born with an obvious disease and visible changes in the eyes, then progresses to dangerous situations such as keratopathy, cataracts, glaucoma and other harm. adies that are very complicated. When glaucoma is detected – anti-glaucoma medications are prescribed or anti-glaucomatologic operations are performed, refractive errors are corrected, sometimes contact lenses are recommended, imaging irises, sunglbades and eyeglbades. Other measures "- Doc. R. Liutkevičienė
Isolated aniridia is an inherited disease determined by genetic testing PAX6 . "The probability that the aniridium is suffering from a child with the same disease is 50 percent." The genetic and molecular clinics of the Kaunas clinic are being researched on this gene, and family geneticists provide all necessary information on the prognosis and treatment of the disease ", – the director of the clinic of genetic and molecular medicine Virginia Asmonienė
Vida Jočienė said that the hopes of all people with aniridia are currently being referred to geneticists. "They are the greatest hope for aniridic patients. The mission of ophthalmologists is to help patients maintain the balance of low vision that they still have until the day geneticists find this mysterious aniridic weapon. But now, while the treatment is still sought after, I am happy that everyone of us has a personal story telling as a manual. When such patients speak loudly and ask for help, the text becomes clearer and more understandable. It's great that doctors are starting to work with disease records – this will open our wider avenues to the knowledge of our rare disease in the medicine of our country. "
The patient's words are secondary and Dr. R. Liutkevičienė, explaining that the Kaunas Clinic's rare diseases clinical center belongs to the European Network of Reference Centers, which is particularly important for supervising and providing qualified badistance. to patients such as Vidai.At the course of the year, 1,000 children and adults participated in the Eye Clinic on rare diseases. "Although aniridia patients do not have any organization They have not missed any of the Rare Disease Day conferences, they are willing to interact with the media and doctors, take care of each other and encourage more active patients. "R. Liutkevičienė [19659003] Doctors working in Lithuania do miracles – yes V. Jočienė refers to the difficult daily work of doctors. "It's a strong voice not only for me, but also for the specialists trava in Sweden, who admire the persistence of Lithuanians in the vanguard. Therefore, I would like to thank Dr. Renasvičius, head of the Rare Eye Center. Arvydas Gelžinys, Ass. Rasai Liutkevičienė, prof. Ingrid Janulevičienė, coordinator of the Center for Rare and Undiagnosed Diseases and doctors of pediatric neurologist Milda Dambrauskienė. These people are always close when we want advice, advice and all our heart looking for ways to help us live with this disease. I am with them and will be grateful to them all my life. "Vida Jočienė adds that she is currently collaborating with an ophthalmologist Dr. R. Liutkeviciene and Dr. V. Ašmonienė genetic doctor prepares the first book in Lithuania on people with aniridosis
Currently, it is not There is no treatment symptom that eliminates the genetic cause of the disease.If corneal epithelial lesions are detected, artificial tears without preservatives are prescribed.If there are significant corneal lesions, a keratoplasty or implantable corneal prosthesis can be performed if a cataract is detected – an operation to remove the lens is performed
Kaunas Clinic Information
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