Andrea Reed Elmore and Doran Reed are siblings who’ve been preventing in opposition to sickle cell illness — an inherited, painful and typically crippling blood dysfunction — since they have been infants. Health care suppliers at UCLA have been with them all through their journey and proceed to ship care to them as adults.

It has been an extended and troublesome battle, however the brother and sister have supported one another all through. “Their relationship is fantastic,” stated Erica Martinez, a nurse practitioner on the Bowyer Oncology Center at UCLA. “They can advocate for each other and support each other because they understand what the other is going through. They can be each other’s backbone.”

Sickle cell illness is marked by faulty hemoglobin — the protein in purple blood cells that carries oxygen all through the physique. Cells with sickle hemoglobin are stiff, sticky and crescent-shaped. They usually clump collectively, blocking small blood vessels. These snags trigger agonizing episodes generally known as ache crises, centered on the limbs, again or chest.

Mary E. Sehl, MD, PhD, affiliate medical professor on the David Geffen School of Medicine at UCLA and an oncologist on the Bowyer Oncology Center, has been an necessary member of the siblings’ care workforce. Treating the illness is advanced, she defined.

“Comprehensive care for persons living with sickle cell disease involves careful attention to detail in addressing all of the organ systems that may be affected — including brain vasculature, eyes, heart, lungs, kidneys, liver, spleen, bone marrow and dental and bone health,” Dr. Sehl stated.

Different medicines, identical resilience

Though each siblings have sickle cell illness, their physicians are taking totally different approaches to their medicines. Reed has been on hydroxyurea, a medicine that causes purple blood cells to grow to be larger, rounder, extra versatile and fewer prone to tackle a sickle kind. His sister is being handled with injections of a unique remedy, crizanlizumab, to cut back ache crises.

“We’re excited to hear about all the new medications that are coming out, but they don’t work for everyone,” stated Reed Elmore. “I’ve tried a lot of different medications,” however due to the progressive nature of the illness, many lose their effectiveness over time. “We don’t know yet if this one will work for me, but that’s been the course of my journey over the past few years,” she stated.

Pillars of assist

In spite of the uncertainties, the siblings ascribe their means to persevere to their robust household bond and their UCLA Health caregivers who’ve been with them each step of the way in which.

“The great thing about UCLA is that our doctors and staff have always educated us about how to deal with our illness,” stated Reed Elmore. “We also know our bodies well enough to advocate for ourselves, and to have real conversations with our doctors. They are always striving to understand sickle cell disease and to improve the care that can be delivered to give us the best quality of life.”

Having a robust assist system is crucial for folks with sickle cell illness, stated Martinez.

“This disease is debilitating, and without a support system, it is very difficult to manage it,” she stated. “There also is a stigma to sickle cell disease, and we are trying to break that so patients are treated with the care and compassion they deserve.”

Family assist, too, is crucial. Reed stated their mom prepped household and mates find out how to reply if he or his sister had a disaster. “We’ve always had a great support system of friends and family who understood their assignment when things became hard,” he stated.

The siblings acquired an opportunity to point out how robust their household bond is when the Los Angeles Dodgers acknowledged them in entrance of a stadium filled with followers — together with members of their household — earlier than a latest recreation at Dodger Stadium.

“It was amazing and emotional. To be presented with a jersey with our names on it was so unexpected,” stated Reed. “It felt awesome to be honored by so many people. We really feel supported, and that’s a blessing.”