Meet Kyle A. Smith, Tahirah Austin-Muhammad and Ediomi Utuk-Lowery | Co-Founders, Chief Executive Officer, Chief Operations Officer and Chief Marketing and Communications Officer

We had the good fortune of connecting with Kyle A. Smith, Tahirah Austin-Muhammad and Ediomi Utuk-Lowery and we’ve shared our conversation below.

Hi Kyle, Tahirah and Ediomi, we’d love to hear more about how you thought about starting your own business?
Our organization was founded out of necessity and grief. Unfortunately, we lost a close friend and well known member of our community to sickle cell disease (SCD). Our hospitals weren’t caring for us properly and our local community-based organization wasn’t servicing us the way we felt we deserved. We decided to be the change we wanted to see.

We knew we wanted to serve this community and know all of our own individual experiences but we needed to do more research and understand better what the community needs were. After collecting data and input we decided to primarily focus on adults transitioning from pediatric to adult care which is a critical time within a chronic disease patient’s life. However, only being there at this critical juncture wasn’t enough–we wanted to be there throughout an individual’s lifespan of living with this disease.

Our three core initiatives focus on providing psychosocial and case management support, allowing medical students to have real-life conversations with SCD patients and learn how this disease truly impacts their lives daily, and highlighting healthcare transition topics for SCD patients preparing to enter new health institutions.

Can you open up a bit about your work and career? We’re big fans and we’d love for our community to learn more about your work.
We’re all about education and serving our community through evidence-based care and advocacy. Through this we’re able to partner with local hospitals to improve the care of those living with sickle cell disease.

Sickle cell disease is the most common inherited blood condition. It affects red blood cells, which are responsible for carrying oxygen throughout the body via a protein called hemoglobin. In people with sickle cell disease, a hemoglobin mutation causes red blood cells to lose oxygen. When red blood cells become deoxygenated, they become rigid and sickle shaped. This causes them to clump together, instead of flowing freely through small blood vessels. This can cause pain crises when oxygen doesn’t reach bone or muscles, or acute chest syndrome and stroke when oxygen doesn’t reach lung and brain tissue.

Sickle cell disease occurs most commonly in people with origins from Africa, South or Central America (especially Panama), Caribbean islands, Mediterranean countries (such as Turkey, Greece, and Italy), India, and Saudi Arabia.

Although bone marrow or stem cell transplantation is a cure for sickle cell disease, you ideally need to have a sibling without sickle cell disease who is a perfect match for this to be considered. The availability of a sibling donor is relatively uncommon so currently, there is no widely accessible or “universal” cure for sickle cell disease.

Another disappointment is that there are no treatments that target sickle cell-related acute pain. Pain treatment remains supportive, and medication can calm the pain until it wears off. However, no medication specific for sickle cell-related pain exists so that the pain intensity reduction could be long-lasting or the pain episode could be shorter.

General treatment approaches today focus on early detection, symptom management, and complication prevention. Our hope is to someday be on an equitable playing field through awareness, education, research, and treatment options.

We are a “for us, by us” organization meaning the three of us live with this disease and understand how difficult it can be day-to-day. So we’ve created an organization that serves our communities direct and unique needs.

If you had a friend visiting you, what are some of the local spots you’d want to take them around to?
We’re based in Philly so we’d have to hit all the staples to the City of Brotherly Love. Cheesesteaks, soft pretzels, water ice and more. The art museum where the Rocky steps are would be a must-see as well.

The Shoutout series is all about recognizing that our success and where we are in life is at least somewhat thanks to the efforts, support, mentorship, love and encouragement of others. So is there someone that you want to dedicate your shoutout to?

Website: https://www.crescentfoundationscd.org/

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