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.
It’s that feeling of dread every time I open the letters from our health insurer. Is it going to be a denial? No matter how many times a denial happens, I go into panic mode. Instantly, I am calculating how many phone calls will be made, how many letters to write, how long will it take. These inevitably come on a Saturday so my panic gets to settle in all the way until Monday.
When we started this foundation three years ago, our goal was simply to get another family a handheld blood analyzer so they could have a little more control over a medical condition that takes a lot of guesswork. And no one should have to rely on guesswork to keep their children from ER trips and hospitalizations or worse. That goal has been achieved 14 times since. We have nothing but gratitude for the support that has come in to make this happen and we plan to continue this work.
Connor, now 17 years old, was born with a rare type of brain tumor called hypothalamic hamartoma (HH) . Connor experienced gelastic seizures (a symptom of HH) from birth. Gelastic seizures are rare and involve episodes of nervous laughter with no apparent trigger. The seizures were never diagnosed until he began having complex partial seizures.
If you were unable to attend our Meet the Experts webinar with Marci Serota, RDN …
