Zakariya “Zakky” Gheith was born in Feb. 2013 and is now 7 years old. When he was diagnosed with a benign brain tumor (optic pathway glioma) at 4 ½ months old, we didn’t think he would make it to a year old. God and the army of support that followed proved us wrong.
In ENDOOnline 2020’s first session last Monday, Wiebke Arlt, MD, DSc, FRCP, FMedSci, of the University of Birmingham, updated conference attendees on steroid dosing for Adrenal Insufficient patients with COVID-19. The discussion was focused both on primary adrenal insufficiency (PAI) or Addison’s Disease and secondary adrenal insufficiency (SAI) which is typically caused by hypothalamic-pituitary disorders, the risks for patients and steroid treatment plan for patients diagnosed with COVID-19.
The Raymond A. Wood Foundation (RAWF) launches the third year of “Art of Surviving,” a virtual art exhibition that celebrates the creativity of the brain tumor community during the month of May, which is Brain Tumor Awareness Month. Brain tumor patients and survivors, along with caregivers and family members from all over the world submitted over a hundred entries in all types of media, including photography, digital art, drawing, painting, printmaking, 3-D, multimedia, and creative writing.
Raymond A. Wood Foundation (RAWF) announces a new mission to empower hypothalamic-pituitary brain tumor survivors for improved quality of life by providing access to education, technology, and evolving treatments. The mission expands the foundation’s reach to include adult survivors and narrows its focus to those tumors that occupy the central part of the brain and impact the endocrine system, metabolic processes, cognition and behavior, vision, growth, stress response, and other important body functions.
Last week, Saniona, biopharmaceutical company focused on rare diseases, announced top line results from its 24-week double blind, randomized, placebo-controlled Phase 2 trial evaluating the safety and efficacy of Tesomet in patients with hypothalamic obesity (HO).
Most hypothalamic-pituitary brain tumor patients suffer from secondary adrenal insufficiency (SAI), which is the brain’s inability to signal cortisol production in the event of the body being in distress, and diabetes insipidus (DI), the which is a result of the disruption of production of the anti-diuretic hormone which causes issues with body fluid balances and blood sodium levels. With the coronavirus outbreak, many questions have been raised about patients with SAI being immunosuppressed or “high-risk.”
Jaxon Sloat , age 5, of Macomb, Michigan, is described as a vibrant, determined little boy. He was born at 30 weeks and, as a result, he has cerebral palsy. At diagnosis the family was told Jaxon wouldn’t be able to walk or talk but he worked hard over the past few years and has proven many people wrong. He has had setbacks along the way, but his mom JoAnne Sloat, says that doesn’t slow him down.
Stress and anxiety tend to be a built-in side effect of surviving a brain tumor or caregiving for a survivor, but add in the current circumstances and there may be moments where you truly feel like it is tough to get through the day.
In the last few weeks, we have adapted to so many changes — from working at home to schooling our kids to strategic planning of grocery store trips. Many of us have also experienced the evolving frontier of telemedicine appointments. Telemedicine may open some new doors for patients with rare medical conditions to access specialists that geographically may have been impossible to see through traditional in-person appointments. That would be an exciting development to come of this current crisis.
If you are a parent/caregiver of a child with neuroendocrine side effects of a brain tumor, the concern over the coronavirus (COVID-19) doesn’t just include worries that he or she may contract the virus. There could potentially be a shortage of medications and concerns over management of the chronic conditions that sometimes require emergency department visits in a normal health climate.
