Crescent Foundation launches to help local adults living with sickle cell disease

Citizens of the Week: Crescent Foundation

As people with sickle cell affliction live longer, they need more and dissimilar back up. A group of young patients in Philly is here to give it to them.

Aug. 04, 2020

Some people call up of sickle cell disease (SCD) equally an invisible illness. Y'all tin can't tell someone has it merely by looking at them.

But the genetic disease, which afflicts about 100,000 Americans, almost of them Black, can wreak havoc on the physical and emotional well-being of those who are born with it.

It tin crusade debilitating pain, exhaustion and aridity, also every bit weakness and headaches. SCD patients frequently finish upwards in the infirmary due to acute hurting, for intravenous hydration, or with infections that manifest with flu-similar signs. Symptoms of SCD, and side effects of medicines used for patients with SCD, tin can cause patients to miss school or work for days on end.

It also, until recently, led to an early on expiry, with life expectancy betwixt 20 and 25 years onetime. Now, thanks to new advances in medicine similar factor therapy and HydroxyUrea, a chemotherapy drug that produces fetal hemoglobin F blood cells to keep carmine blood cells intact, patients are living well into their 60s.

"1 real challenge is experiencing new complications from the disease as you get older, which has been really difficult for me. You feel like I've finally figured this affair out, then sickle cell is like 'nah, we still got new things to show you lot,'" he says.

It'due south life-changing news for patients and their families. It has besides led a whole new globe of needs and concerns for those patients living well into adulthood with an oft-disregarded disease. And with SCD in the U.S. predominantly affecting African Americans—approximately i out of every 365 Black people born in the U.S. has SCD—many patients say they haven't received the resources or attention other genetic and chronic diseases exercise.

"Some diseases are 'sexy' and for then long sickle cell wasn't 'sexy' enough for people to actually care about it," says Kyle A. Smith, a local SCD patient in his late 20s. "Now that at that place are drugs beingness adult for sickle prison cell disease, nosotros're 'sexier.' People are starting to care a piffling bit more."

Tackling bias in health care

This summer, Smith, Tahirah Austin, and Ediomi Utuk-Lowery, SCD patients now in their 20s and early 30s, launched Crescent Foundation, to support, brainwash, and advocate for Black people living with SCD who are transitioning from pediatric care to adult care, and to spark conversations among patients and health care workers well-nigh the handling of Black bodies in health intendance. (The name pays tribute to the assistant-shaped red blood cells that are a hallmark of SCD.)

"This disease is not a Black disease globally, but here in the U.Due south., the majority of people who have this disease are Black. Seeing people who take other diseases have some type of curative treatment and therapies, and for u.s. to always be pushed into the shadow, I think that there has to be some type of understanding that these biases do exist considering of the color of our skin," Smith says.

The launch comes at a time when an understanding of racial disparities in health care are finally taking center stage, in part because of Covid-19, and its disproportionate effect on African Americans. Increasingly, Black people are speaking upwardly about their negative health intendance experiences—like having their symptoms ignored, pain doubted, and autonomy denied.

In their day jobs, Smith is assistant director of development at Drexel University; Austin is a hematology customs wellness worker at CHOP; and Utuk-Lowery is a marketing consultant at American Express. Given their combined personal and professional connections, they feel poised to have a real affect on their disregarded community.

Connecting with doctors

With initial funds from Penn Medicine and Global Blood Therapeutics Grouping, a pharmaceutical company, they plan to adopt a multifaceted approach to education, targeting patients, medical students and practicing physicians.

In Philly, patients whose SCD has been managed past CHOP are guided to adult hematology specialists once they hit age 22. Simply some experience like they're in a no-man's-land, beingness cared for by their pediatrician well later adolescence.

Many patients who've adult stiff bonds with their pediatric physicians, who they've known from early childhood into machismo, do not have the same kind of deep and holistic relationships with their adult intendance providers.

Consider the plight of Austin, now a mother. "Equally an developed, I've had more bug with astute chest syndrome, which is a type of pneumonia. And so after I gave nativity to my daughter I developed some kidney bug that oasis't resolved," she says.

Soonhoped-for mothers with SCD are labeled loftier-risk patients, making their management both pre- and postnatally an area where they need the support of peers and physicians. Crescent Foundation wants to secure the safety of these patients by creating safe spaces for them to speak upwardly when it comes to the lack of information and resources about their unique motherhood trajectories.

Smith sees the potential for the foundation to help patients with the mental health aspect of their affliction too. "For so long, I experienced complications that were not only physically painful, but also emotionally and mentally painful. Having a comprehensive understanding of what my disease was and how information technology was impacting my body and my lifestyle was not necessarily the easiest affair, peculiarly when I got into my boyhood," he says.

He hopes to be able to provide the SCD community with the resource that would brand seeking mental health services accessible to adults and those transitioning from pediatric to adult health intendance facilities.

By forging connections with therapists at Penn Medicine, CHOP, and throughout the urban center of Philadelphia who specialize in working with Black patients, Smith wants the SCD customs to know at that place are experts who are in that location for them.

Raising awareness

Utuk-Lowery hopes to demystify and destigmatize SCD among people who don't have it. She recalls how isolating it was as a child to have special medical needs.

"In school, I was the one with the water bottle [to combat dehydration, which in SCD patients can lead to blood cells sticking together], when nobody else had a h2o bottle. At present water bottles are a thing, like it'south ok to come to school with them, merely we had to get written permission from our doctors, have them to our school master, who and then would accept to take them to the school nurse and requite u.s.a. a note. It was a very complex experience growing up."

"Until deaths in the sickle jail cell community have decreased, and new medicines are obtainable without all of the hierarchy, when that'southward not a worry of mine, I'll residual," says Austin. "But until then, I'll keep working."

She sees the ability in normalizing this disease for people who are unfamiliar with information technology by holding conversations in medical colleges, loftier schools and form schools where students may not realize that their peers live with it.

She says it'due south important to brainwash people who are unfamiliar with SCD well-nigh how information technology can affect day-to-day living, how information technology's genetically passed down and what we can practise to advocate as a community.

Smith says that no matter how familiar SCD patients are with the electric current state of their disease, there is e'er more to learn. "1 real claiming is experiencing new complications from the disease equally yous get older, which has been really hard for me. Yous feel like I've finally figured this affair out, then sickle prison cell is like 'nah, nosotros even so got new things to testify you,'" he says.

He hopes to reach patients through both local and, eventually, global outreach, that will raise awareness about life with SCD. He too plans to launch educational seminars that will put Crescent Foundation community members in environments where they can teach the next generation of physicians about the firsthand experience of life with SCD.

The friends start met through CHOP's (now defunct) Camp Gratis To Be Me, a two-week summer program for kids with SCD that allowed them to experience the joys of camp while under the supervision of instructors who knew how to care for kids with the disease. They commencement conceived of the idea for a foundation in 2016.

While the pandemic has put their in-person plans on concur, they are hosting ongoing webinars with leading doctors in Philadelphia in the SCD field, getting prepare for their website launch for late Baronial, and planning a social media takeover during the calendar month of September (SCD awareness month) to build customs and become people excited about what'due south in store for the Crescent Foundation customs.

"We won't stop until sickle cell is talked about equally much as health bug like HIV or like breast cancer. Crescent will practice all that we can to be a resource and a support system for those living with sickle cell disease, and their families. Until deaths in the sickle cell community accept decreased, and new medicines are obtainable without all of the bureaucracy, when that'due south not a worry of mine, I'll residual," says Austin. "Only until then, I'll go along working."

Photograph courtesy Crescent Foundation

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Source: https://thephiladelphiacitizen.org/crescent-foundation-sickle-cell-disease/

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