Kavya Poornima Balajepalli lost her eyesight at 21 years of age due to undiagnosed idiopathic intracranial hypertension (IIH). This occurred in less than a 2 week time period while she was in her final year to receive a Bachelor of Architecture (B Arch) from the University of Mumbai.
Her IIH story starts in August 2017 when she began to experience headaches that she described as heavy, full, excruciating, and throbbing in nature that did not respond to over-the-counter medications. Her doctors attributed her headaches to her baseline medical history of polycystic ovarian syndromeA hormonal disorder, seen in women, that is not well understood (PCOSA hormonal disorder, seen in women, that is not well understood), menorrhagiaheavy bleeding from menstrual cycle, and low hemoglobin. About 10 days prior to her vision loss, she experienced: extreme fatigue, chronic back pain, hyperacusisincreased sensitivity to noise, nausea, photophobiasensitivity to light, and brain fog that did not improve with conservative treatment.
Two months prior to this, her refractive eye correction power worsened rapidly, compared to the previous years where it only occurred once or twice a year. The second week of August, she began to experience blurred vision and was unable to open her eyes due to severe headaches
Due to her history of menorrhagia and anemia, and her previous menstrual cycle that lasted for 60 days, once her cycle started on August 11, she was admitted to a hospital for low hemoglobin associated with ongoing menstrual bleeding. Kavya continued to have slightly blurred vision in her right eye and some double vision (diplopia) until the next morning, she woke up with complete visual loss. She was rushed to an eye hospital and was immediately seen by an ophthalmologistA specialist in the branch of medicine concerned with the study and treatment of disorders and diseases of the eye., where she was diagnosed with malignant papilledemaSwelling of the optic nerve that carries visual signals from the eye to the brain.. She was then evaluated by neurologists who performed a lumbar punctureA procedure where a needle is placed in the lower part of the spine (the lumbar spine) to access cerebrospinal fluid. on August 13, 2017 with an opening pressure of 55 cm of H₂0 (which is high). She also underwent an MRI and many other tests where she was given the diagnosis of IIH on August 14, 2017. Because of the elevated opening pressure from her lumbar puncture, she was put on lumbar drain. Then underwent bilateral optic nerve sheath fenestrationA surgical procedure performed that allows cerebrospinal fluid to pass around the optic nerve freely (ONSFoptic nerve sheath fenestration ) to decompress her optic nerves associated with the findings of malignant papilledema. Two days later, for long-run management of IIH symptoms, she underwent a lumboperitoneal shuntA procedure that prevents the accumulation of excess cerebrospinal fluid in the brain. (LP shuntA hollow tube that can be surgically placed in the sinus to help drain cerebrospinal fluid.) as she was not considered for a ventriculoperitoneal shuntA procedure undertaken to prevent accumulation of excess cerebrospinal fluid in the brain (VP shunt) on the first go due to her narrow ventricles.
After her procedures on August 14 and 17, she has gradually gained 2% of the visual field of her right eye and 0% in her left eye. Due to the severity and rapidness of her visual condition, she was diagnosed with fulminant IIH.
In November 2017, the symptoms worsened and she underwent an LP shunt revision and was diagnosed with steroid induced osteoporosis.
Since August of 2017, she continues to receive tremendous support from her family. She also received special approval from her university to complete her degree in architecture in 2021.
Currently she is undergoing regular eye evaluations, pain management, has a programmable VP shunt and is navigating through her life with blindness. She is utilizing her degree in architecture to improve accessibility in her community for people with disabilities. Through her fellowship under the National Centre for Promotion of Employment for Disabled People NCPEDP, she is able to increase awareness and advocacy for these populations.
She is an IIH warrior and spreads her journey and knowledge of this condition through her Instagram handle @IIH Warriors India and Twitter account @KavyaPoornimaB. She runs a support group, Idiopathic Intracranial Hypertension Warriors in India, on Facebook since 2017 to unite IIH warriors and their caregivers. She continues to raise awareness for disability, universal accessibility, and is active in creating inclusive architecture. She curates Poornamidam, to support her advocacy endeavors.
Thank you Kavya for sharing your incredible journey and showing us how you have overcome so many obstacles but are still able to achieve your dreams. You are an inspiration to us all.
