Moving Forward With Alexis Shapiro
Alexis Shapiro is the young girl who, by age 12, was gaining two pounds each week and was approaching 200 pounds in total after having been diagnosed with a rare brain tumor three years prior. Alexis gained about 140 pounds in less than two years owing to hypothalamic obesity. Shapiro’s body was in a state where it gained weight despite thinking that it is starving. See my share post, “Girl with Rare Disease Cannot Stop Excessive Eating” for that story.
Alexis Shapiro’s brain tumor was causing life-threatening conditions and had to be removed. The surgery damaged the hypothalamus and pituitary gland - both of which regulate energy balance, appetite, and weight. It was then that the weight gain began.
To complicate matters that much more, the Shapiro family was insured by a carrier who had refused to cover bariatric surgery. NBC News ran a piece on Alexis, and shortly thereafter donations pured in, totaling $78,000. The Shapiro's insurance carrier also reversed the decision to deny health insurance coverage. Alexis received the weight loss surgery she needed. See my share post, “Alexis Shapiro Gets Surgery to Relieve Weight Gain from Rare Disease” for that story.
While the weight loss surgery did not produce a fairy tale ending, it did provide opportunity. Alexis’ path is difficult, but she has already seen significant results.
The Difficult Road
Alexis also has adrenal insufficiency (AI) that can cause potentially lethal blackouts. Her condition must be managed around the clock through the administration of oral steroids, and ready access to a needle and the drug Solu Cortef. An injection must be administered within 30 minutes of serious symptoms. Curiously enough, ambulances do not carry the Solu Cortef despite the contention of a leading specialist that adrenal insufficiency in under diagnosed and could affect several million people in the United States.
At its worst, AI can cause disorientation, shock, organ failure and death brought on by stress, sudden injury or illness. Alexis has already had two close calls, the second of which Alexis reported all things going dark prior to the arrival of an ambulance.
The Shapiro family is currently involved with a network that is lobbying for all EMS units to carry Solu Cortef and to better educate first responders about the illness.
The Good News
Despite the trials endured by the Shapiro family, there is good news to report. Now fifty pounds lighter, Alexis Shapiro has returned to school for the first time in about two years. She is regaining her health and defines herself as "reborn." Upon her return the school nurse was armed with a walkie-talkie, emergency medicine, and a needle.
Obviously, adjustments need to be made. If Alexis displays warning symptoms, teachers have been instructed to radio the school nurse who will then administer an injection. Jenny Shapiro, mother of Alexis, would prefer her daughter keep a needle and the drug in her backpack. But Mom is adjusting, as well, learning to let go a bit despite that difficultly.
Alexis herself is moving forward. Her mother has a medic alert patch attached to Alexis’ backpack. Although Alexis would prefer to be without it, she says she understands. Alexis’ desire is "just...be a normal kid." She recently shared with her mom that when she would look in the mirror she used to see a chubby girl. But Alexis now sees someone pretty who she likes.
Living larger than ever,
My Bariatric Life
UCSF Medical Center
Published On: November 29, 2014