By Akshat Jain, MD
Hopeless and listless, in severe pain because part of her bone had died due to complications of Sickle Cell Disease, is how I saw this teenager for the first time, in my office, sent to see me as no one else seemed to know what to do with her.
She was labelled everything from a “faker”, an “addict”, “drug seeking” etc. – all terms commonly used for patients with Sickle Cell disease, to lump them all in this one huge mold of, medically undesirables.
Sickle Cell Disease is where your red blood cells cannot carry oxygen efficiently to any part of your body, thus leading to a slow but steady damage to every organ in the human body, most commonly affecting the blood rich bone and bone marrow, leading to severe sudden bone death. This is called as a “Crisis”, aptly so, as it is no less than a state of emergency that the body undergoes, triggering what is a storm of stress molecules called as “antioxidants” that force the red blood cells in the blood to shrivel up into the shape of a Sickle, and eventually break open and die.
This patient was going through one of her pain crises, but a severe form, where due to the lack of blood supply the bone has permanently died, which leads to an excruciating amount of pain, sometimes not even controlled with potent opioid pain medications. The bone had undergone necrosis, and there was going to be no relief from pain for her in the near future. Yet I had seen her visit after visit, full of spirit, full of energy and always trying something new. A new hair color, strange outfits, headphones -anything that would make her stand apart and give her a reason to step out of her bed that day, and be able to bear the terrible pain.
The recent attention that opioid crisis has gotten, has got everyone riled up, and rightfully so, except that a negative repercussion of stringent measures was the creation of an environment of reluctance to prescribe opioid pain medications to patients with Sickle Cell Disease for the fear of retribution by the law enforcement agencies. It hit these patients hard, at times forcing them to go to the streets to procure a quick fix that would take the pain away.
Chronic pain from a lifelong disease like Sickle Cell makes these patients eligible for “Make A Wish” foundation grant, which allows them one wish in a lifetime, supported by the funds from this foundation. Most children / teenagers prefer going to Disney or a theme park, travel to an exotic country, meeting a celebrity, or a shopping spree. The brief moment of happiness that these children get through the efforts of the foundation is extremely gratifying to watch and soothing to the soul. While still in pain and suffering, they get a reprieve from being judged, for once. This patient signed up for the “wish” and the form came to me for approval. Knowing very well that she is somewhat of child with the flare of drama, the wish was going to be unique. Not in the wildest expectation did I expect to see what was in front of my eyes on my office desk.
Her wish was to take all the money that the foundation would allow her, and request to feed women who had been victims of abuse in their shelter homes. She didn’t ask anything for herself or her mother, both of whom had been homeless and on the streets themselves a few years ago. She did not fault the system. She did not use this as her golden parachute, but used this as an opportunity to show the world that never to judge a book by its cover. There is always an opportunity, always a room to find ways to spread the love, to share what you have.
Akshat Jain M.D., M.P.H. is a renowned Hematologist, Oncologist and Stem Cell Transplantation specialist and cares for children and adults with cancer. He heads the bleeding disorder and Hemoglobinopathies program at the Linda University School of Medicine in Los Angeles and a Professor of Public Health at the Loma Linda School of Public Health.
