Date: 03/11/2022

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For decades, people with rare conditions like ichthyosis have struggled from a lack of knowledge and research behind their treatment plans. Fortunately, that's all changing as modern advances improve our understanding of these conditions and how they can be remedied. For one, the medical scholarship on ichthyosis continues to expand. In 2020, scientists from Hokkaido University found a missing genetic link leading to ichthyosis prematurity syndrome. This is a finding that they believe will further progress to formulate care plans for this currently untreatable disease.

On the other hand, there are technological advancements like telemedicine. Though it's been around since the '50s, it became immensely popular amid the pandemic as patients sought to avoid visiting hospitals in person. Today, telemedicine is proving it can play a significant role in ichthyosis diagnosis and management. Here's how.

Increased access

Amid the pandemic, accommodations made for the disabled were sacrificed to make way for social distancing measures. Patients with challenging conditions struggled to continue treatment in the early days of the pandemic. Measures like social distancing only prolong essential trips to places like groceries or vaccination centers. On the other side of the coin, trends like remote work can make things easier by putting patients in fewer situations that exacerbate their skin. This same benefit applies to ichthyosis patients using telemedicine. The CNBC notes that here, they can meet doctors at their own convenience without undergoing commutes or waiting at the hospital — all at a fraction of the cost usually paid for face-to-face visits. These advantages are particularly pronounced for low-income families who may have difficulties fitting appointments into their schedules or budget. This all helps ichthyosis patients get the care they need.

Improved patient care

In January 2021, Revcycle Intelligence found that the demand for nurses alone skyrocketed by 245%, and this percentage has only increased since then. This surge can be attributed to the need for nurses not just for the pandemic, but also for non-COVID patients needing urgent care. Fortunately, ichthyosis patients need not be sidelined by COVID-19. Maryville University explains that modern technology in nursing is helping nurses care for more patients more efficiently than ever before. One tool they're using is the electronic health record (EHR) system. Typically integrated into telemedicine platforms, EHRs centralize input from various healthcare professionals — including nurses, doctors, lab technicians, and radiologists — in real time. This eliminates the risk of human error caused by duplicated updates or loss of physical copies. Nurses can even access patient records remotely, allowing them to

facilitate the quicker and more effective treatment of patients. Ichthyosis patients are thus assured better care from telemedicine thanks to less-overburdened healthcare professionals who make more accurate medical decisions.

Enhanced connectivity

Arguably the foremost benefit of telemedicine is that it harnesses the connectivity of the Internet, expanding use cases for both healthcare professionals and patients alike. For those with ichthyosis, this can streamline the process of finding the best expert who can diagnose and prescribe the best treatment plan for their needs. For example, patients living in rural areas can immediately search for specialists for their condition and set an appointment with them, regardless of if that expert lives in America or Europe. For healthcare professionals, this means improved capabilities for diagnosing patients and helping them manage their ichthyosis. Aside from using EHRs, they can use integrated telemedicine platforms to do everything from requesting lab tests and prescribing medicines from pharmacists to remote patient monitoring. It can even help doctors consult one another for particularly challenging cases. FIRST's secure and HIPAA-compliant TeleIcthyosis Portal is a doctor-to-doctor platform that allows doctors to share patient-provided documents and images so they can better navigate specific cases of ichthyosis. Telemedicine thus goes beyond making ichthyosis care more accessible by helping it be more comprehensive and continuous in its application. As modern medicine and technology continue to advance, the outlook for patients with rare conditions like ichthyosis only continues to improve. By helping solve fundamental problems like accessibility and quality of care, telemedicine can be considered the first step to that better future.

Article written by Rae Johns Exclusively for FIRST