September 29, 2020

Texas Children’s Hematology Center participated in virtual celebrations and community awareness activities during National Sickle Cell Disease and Immune Thrombocytopenia (ITP) Awareness Month.

Throughout the month of September, our Hematology Center staff honored our patients and their families who have been touched by sickle cell disease and ITP, two types of blood disorders that the center treats annually. While this year’s activities were celebrated in a virtual and socially distant way to keep everyone safe during COVID-19, the celebrations not only recognized our patients, but celebrated our hematology staff who play an important role in improving the care and outcomes of patients with blood disorders.

“We look forward each year in September to raising public awareness about sickle cell disease and ITP,” said Dr. Jenny Despotovic, director of Texas Children’s Hematology Center. “We are grateful to our patients and to our team, who continue to help us advance research towards developing novel treatment approaches to improve the long-term outcomes for patients with these rare types of blood disorders.”

Several highlights from Texas Children’s sickle cell disease and ITP awareness activities included:

Sport Purple for Platelets Day

In recognition of Sport Purple for Platelets Day on September 25, Dr. Jenny Despotovic explains in this video, why we wear purple to show support and advocate for children and adults with ITP, an immune-related blood clotting disorder of platelets that can lead to excessive bruising and bleeding. Approximately 60 to 70 new patients with ITP are seen at Texas Children’s Hematology Center every year.

Making a Mark Virtual art gallery

Presented by The Periwinkle Foundation, the Making A Mark® exhibition showcased art and creative writing by children ages 3 to 22 who have been affected by cancer and blood disorders. The exhibit opens each year in September and this year it was hosted virtually on The Periwinkle Foundation website. The exhibit featured over 130 pieces of art and creative writing made by patients and their siblings. A panel of guest judges selected 15 purple ribbon pieces which they feel convey a positive message about childhood cancer and blood disorders awareness. Click here to access the art gallery.

Sickle Cell Twitter party

To focus attention on the need for research and treatment of sickle cell disease, the 7WT nursing unit partnered with the Sickle Cell Disease Association of America (SCDAA) for a Twitter party. This year’s theme was “Sickle Cell Matters”. The staff on the unit decorated the family lounge with a balloon wall for photos and gifted their Sickle Cell Disease patients with a token of love. The patients, nursing and physician staff were all invited to join in on the fun. Photos were taken with signs in an effort to increase awareness about sickle cell disease and sickle cell trait during the month of September. In recognition of sickle cell disease awareness month, patients visiting our outpatient clinic received red Mardi Gras beads and red ribbons to decorate and write inspiring messages for others facing this disease.

Hematology staff video messages

To celebrate our patients and their families, our Hematology team gathered virtually to share inspiring video messages throughout the month of September. Click here to view messages from Drs. Titi Fasipe and Venée Tubman, co-directors of the Sickle Cell Disease Program, and Dr. Amber Yates, associate director of the Pediatric Hematology and Oncology Fellowship Program.

Other community outreach efforts

Our Hematology staff also engaged in numerous sickle cell disease and ITP awareness activities:

  • Dr. Jenny Despotovic was recently recognized as an Expertscape World Expert in Idiopathic thrombocytopenic Purpura (ITP), the most common immune hematologic disorder. Despotovic is the editor of the Immune Hem textbook. A number of our hematologists at Texas Children’s Hospital contributed to this textbook. Click here to read more about this scholarly milestone.
  • Dr. Venée Tubman was recently awarded a five year K23 grant from the National Heart, Lung and Blood Institute of the National Institutes of Health for her project, “Characterization of B lymphocyte deficiency in pediatric sickle cell disease.” On September 30, Tubman will deliver a presentation on “The Impact of Race and Racism on Individuals with Sickle Cell Disease” during a webinar hosted by Harvard Medical School that focuses on addressing health care disparities.
  • Dr. Titi Fasipe was an invited co-guest with Mary Hulihan, Dr.PH, of the Centers for Disease Control on a live podcast, Saturday Mornings with Joy Key, on September 12..The podcast was aired on BlogTalkRadio. Also, Fasipe participated in the American Society of Hematology (ASH) Virtual Hill Day and met with congressional staff virtually during the week of Sept 21. Fasipe was selected as a reviewer of the consensus report on “Addressing Sickle Cell Disease: A strategic Plan and Blueprint for Action.” As Chair of the Houston Sickle Cell Collaborative, Fasipe will participate in a panel discussion during the Virtual Sickle Cell Advocacy Summit on October 8 titled “Harnessing the Power of the Collective,” and will provide closing remarks. TCH Sickle Cell Program will have a virtual booth.
  • Dr. Amber Yates participated in a webinar sponsored by the Red Cross – Los Angeles as part of their Community Conversations series titled Sickle Cell: The Heroes and the Facts. She also presented on the use of Hydroxyurea in the treatment of sickle cell disease for a program called SCD Talks with Agnes, who is the founder of Australian Sickle Cell Advocacy, a community based organization for people with SCD in Australia. Yates was asked to “takeover” the HHS Office of the Chief Technology Officer Twitter handle on Sept. 22 to amplify her voice about SCD and she also participated in the Roundtable on Leveraging Data to Address Sickle Cell Disease hosted by the HHS Office of the Chief Technology Officer. Yates was asked to serve on the Editorial Board for Pediatric Blood and Cancer, and as deputy editor of AAP PREP Hematology-Oncology Editorial Board.

Click here to learn more about Texas Children’s Hematology Center.

September 26, 2019

The Sickle Cell Program at Texas Children’s Hematology Center is the largest in Texas, serving more than 1,000 children a year. The clinic offers the latest treatments for the inherited red blood cell disorder and conducts some of the top research in the field.

The program’s multidisciplinary staff is made up of board-certified pediatric hematologists, hematology-trained nurse practitioners and physician assistants, research staff, as well as social worker and child life specialists. A couple of providers suffer from sickle cell themselves, giving them a unique perspective in caring for their patients.

Texas Children’s Sickle Cell Program Hematologist Dr. Titilope Fasipe and Nurse Practitioner Precious Uwaezuoke both have sickle cell disease. In honor of National Sickle Cell Disease Awareness Month, we talked to them about why they chose to dedicate their profession to caring for children with sickle cell disease and whether living with the disease has allowed them to better connect with patients and their family members.

How has sickle cell affected your life?

Uwaezuoke: My journey with sickle cell has been a tough one. I was in and out of the hospital multiple times when I was younger and there were occasions when I would get depressed. Thanks to family and staff here at Texas Children’s Sickle Cell Program, I was encouraged to stay the course. Sickle cell flares still occur, but I’m able to manage my disease by living a healthy lifestyle and hydroxyurea therapy.

Fasipe: I too suffered from bouts of depression during my early years of battling sickle cell disease. One of my lowest points was when my cousin died from the disease at just 17 years old. Childhood deaths related to sickle cell are not uncommon in Nigeria, which is where I’m from and where screenings and treatments are limited. Because of this, I try not to take life for granted and believe in treasuring all moments, big and small. Like Precious, hydroxyurea has also made a positive difference in my life.

Why did you decide to get into the medical field and help people like yourself?

Uwaezuoke: The treatment I received and the people I met at Texas Children’s inspired me to go into the medical field and help people like myself. I will never forget a nurse who told me to not let sickle cell take over my life; that I could and would be able to do more than just deal with my disease. The connection she made with me during that hard stay in the hospital is part of what made me pursue what is now my passion.

Fasipe: My cousin’s death and my parents’ encouragement motivated me to make a difference in the world and to do work that would help prevent any more deaths like hers. I chose pediatric hematology because I wanted to reach sickle cell patients and their families before they defined how their lives are going to be; and teach them that life can still be beautiful with this disease.

How has having sickle cell helped you connect with patients and families?

Uwaezuoke: A lot of people are devastated when they find out their child has sickle cell disease. Some think it’s a death sentence. The minute I tell them I have the disease and have managed to live a productive, well-balanced life, they break down in tears. They are overjoyed to meet someone older who is living with and managing their disease.

Fasipe: I think many of the families think I can read their minds! For the parents, I acknowledge the guilt and worry they have; and for the children, I acknowledge their pain and fears. After discussing the challenges, we then talk about how we can work together to best manage their disease. The bravery I have seen in our patients has inspired me to become a community sickle cell advocate. I have participated in several Houston sickle cell programs, and served on the first Sickle Cell Advisory Committee of the Texas Department of State Health Services. Precious and I also help coordinate the Texas Children’s Hematology Center’s annual Sickle Cell Education and Research Day, which was recently held at the Houston Museum of Natural Science.

How much progress is being made in finding better treatments cures, for sickle cell disease?

Uwaezuoke: I’m very optimistic. Funding for sickle cell research continues to grow as well as the number of people trying to find better ways to help people with the disease. People who have sickle cell are living longer, especially here in the United States where newborns are screened. All of these things are a step in the right direction.

Fasipe: We are learning more about this disease every day. There are currently several disease-modifying treatments in various stages of the research pipeline; some with successful clinical trials. Gene therapy trials have also shown promise to be a more universal cure than bone marrow transplant, which is only available to a few patients. I am encouraged by how far things have come since I was a child. And, I believe things will only get better.

To learn more about The Sickle Cell Program at Texas Children’s Hematology Center, click here.

September 26, 2018

Sickle cell disease affects more than 100,000 Americans and millions more worldwide. This red blood cell disorder can be treated, but a widely available cure has yet to be found. Texas Children’s hematologist and Assistant Professor of Pediatrics Dr. Vivien Sheehan has recently developed a new sickle cell treatment based on her laboratory research. Sheehan has found that metformin, a commonly used medication for diabetes, has the ability to induce fetal hemoglobin in developing red blood cells.

Since higher levels of fetal hemoglobin reduce sickling in red blood cells of patients with sickle cell disease, the medication could potentially be useful in reducing the severity of sickle cell complications in patients. It also can be taken with another drug that increases fetal hemoglobin, hydroxyurea, to get even more clinical benefit.

Sheehan has been a part of Texas Children’s Cancer Center faculty since 2012, working tirelessly toward advancing sickle cell treatments. During a cancer related conference she attended, it was mentioned that the drug metformin could help with cancer by increasing amounts of proteins that her research showed increased fetal hemoglobin. This led Sheehan to wonder if the drug would increase fetal hemoglobin in cells from patients with sickle cell disease, and sure enough, it did.

“Because metformin is so well studied, so safe, there are millions of people literally taking it,” Sheehan said. “I then went to my Institutional Review Board (IRB) and asked if I could start a clinical trial of metformin in sickle cell patients since it was known to be safe, and wouldn’t cause hypoglycemia even in non-diabetics.”

With funding from Pfizer, in 2016 Sheehan and other researchers were able to launch a clinical trial that is currently assessing the effectiveness of metformin to make fetal hemoglobin in patients with sickle cell cared for here at Texas Children’s Hospital Hematology Center. Pfizer is a world leader in global medical advancement that provides medical research grants and scholarships for new drug development and the latest in cutting edge technology and applications. This not only led to developing the clinical trial, but also led to other acknowledgements and funding such as Sheehan’s Best of ASH recognition, given by the American Society of Hematology at the 2016 annual meeting.

“Her passion truly exudes from her and so a lot of times when you get into conversation with her, you always leave so much more educated because she’s letting you know the newest things that she has learned,” said nurse practitioner Precious Uwaezuoke. “She’s letting you know how her research studies are going. Thus, hearing her speak is always so rewarding and fun. I truly have this huge respect for her just because of how passionate she is about Sickle Cell Disease and our kids.”

Uwaezuoke works closely with Sheehan and the research team, as well as patients, and is responsible for helping to determine who may be good candidates for clinical trials. Fighting sickle cell herself, she knows that at times handling the disease can be very difficult; so she verses how important research is to getting closer to finding a cure for the disease.

“This is a big deal because having sickle cell is not easy. It affects way too many people for us to only have developed one therapy 20 years ago,” Uwaezuoke said. “To be able to see something come to fruition like this because somebody had a dream, and chased it and didn’t let it fall to the wayside is exciting. Anytime somebody wins after trying a therapy and it actually helps them, I feel like I won as well.”

Following the clinical trial, the next step will be commercialization. Sheehan says that the progress is very exhilarating and that it is amazing for a process of this magnitude to have been executed in just four years.

“Usually it takes around 15 years,” Sheehan said. “That’s the average time it takes to develop a drug from the bench to the bedside, and that’s a pharmaceutical company with all of their staff. So now we’re in 2018, we’re almost done with the first arm of our clinical trial, patients taking both hydroxyurea and metformin, and can now analyze and publish our results.”

Overall, preliminary research results show fetal hemoglobin induction, the repair of blood vessels, which is so important to help prevent complications of stroke, retinopathy, renal failure, and the other issues that cause a lot of damage or even death to some patients with sickle cell disease.

“Ultimately, I needed to determine whether patients were having more pain crises or less pain crises on metformin and whether they’re needing more transfusions or fewer transfusions”, Sheehan said. “So I compared the time period before they started the drug to the time period on metformin and they were having fewer pain crises and they were needing fewer transfusions.”

Sheehan says that research is key to improving the use of the tools that we already have. She is now looking for a few more participants to complete the second arm of the clinical trial, patients not on hydroxyurea, and also add adult patients up to the age of 40 years. Sheehan has formed a collaboration with University of Texas Health Sciences Center’s Comprehensive Sickle Cell Center and Dr. Juneja and Dr. Idowu to be able to enroll these patients.

“It’s the only way to advance in a meaningful way. You can make incremental advances just by improving access to care or use of the drug, but you’re not going to make a big, significant change without research. Those with Sickle Cell are doing better through childhood, but they’re still not living longer in adulthood and I think it’s the lack of therapies that will continue to work in our older patients and I feel like this is going to be one of them and I want to see it improve life spans and not just number of years, but health.”

July 3, 2018

For the second consecutive year, Texas Children’s Sickle Cell Center hosted a celebration in honor of World Sickle Cell Day. On June 19, sickle cell patients, families, physicians, researchers and others joined forces to raise awareness about sickle cell disease, an inherited red blood cell disorder that affects about 100,000 Americans and many more worldwide.

Held at Texas Children’s Pavilion for Women, the celebration began with a greeting from one of Texas Children’s Hospital’s most friendly employees, Elsa, one of three therapy dogs who helps comfort patients during their stay at the hospital.

Notable presentations, given by Texas Children’s faculty, reviewed the historical considerations of sickle cell and advancements in care and therapies.

“Our team is doing a great job developing drug strategies, but we do have room to grow,” said Dr. Donald Mahoney Jr., director of Texas Children’s Hematology Center. “Our goal is to make sure the disease is no longer progressive and debilitating.”

Dr. Alex George, co-director of Texas Children’s Sickle Cell Center, highlighted four elements that are essential to Texas Children’s methodology of helping reverse this outlook: patient care, education, research and advocacy. Texas Children’s has been at the forefront of the fight against sickle cell disease for decades, screening newborns for the disease since the 1950s. Since 2011, these efforts have been expanded globally to Africa, where many more people suffer from the disease and screening and treatment are limited.

Texas Children’s is now treating children with sickle cell disease in Angola, Malawi, Uganda, Botswana, and other areas of Sub-Saharan Africa as well as training local physicians to do the same. Dr. Parth Mehta, Director of the Global Oncology Program, and Dr. Peter Wasswa, Director of Hematology for the Global HOPE Hematology/Oncology Pediatric Excellence) Program in Uganda, discussed the various milestones of the programs including the estimated 245,000 babies who have been screened with about one in 65 having sickle cell disease.

Another memorable aspect of this year’s ceremony were the family experiences which reflected on the Center’s individualized course of treatment including patient care, education, psychosocial support services, screening and counseling for children and their families. Serving more than 1,100 children each year, Texas Children’s Sickle Cell Center is one of the largest in Texas, offering the latest treatments including hydroxyurea, transfusions and stem cell transplantation.

Uduak Ekaette and her 15-year-old son have experienced sickle cell care in a low-resource setting having lived in Nigeria, West Africa, and he now receives treatment at the Sickle Cell Center which she describes as a place of hope.

“I really have been blessed in unmeasurable ways by my interactions with the staff at Texas Children’s Hospital,” Ekaette said. “Our experience has been fantastic.”

Maya Cooper, mother of a sickle cell patient, said her family also has had a great experience at Texas Children’s Sickle Cell Center.

“They always strive to keep us in the loop, keep us educated about what’s going on,” Cooper said. “I feel like we can give our input into decision-making, which is a big deal.”

The Coopers moved from San Antonio to be close to family and friends and to receive treatment at Texas Children’s. Cooper’s husband, Ishmael, said their goal is to have their child with sickle cell disease live a normal life.

“Although it is really hard, we do it,” he said. “And it’s all because of Texas Children’s Hospital.”

The Sickle Cell Center also collaborates with organizations across the region to help educate people about sickle cell disease and advocate for a cure. Partners of the Sickle Cell Center that were present during the celebration were; The Periwinkle Foundation, Sickle Cell Association of Texas Marc Thomas Foundation, As One Foundation, Novartis Hematology, and Supporting Our Sicklers (SOS). Each organization provided educational information about sickle cell disease or trait. The Houston Health Department also was present to discuss the importance of newborn screening, improving access to care, and ultimately resolving the health disparity issue.

“We are really fortunate here at Texas Children’s to be able to provide such dedicated care,” said Dr. Amber Yates, co-director of Texas Children’s Sickle Cell Center. “We have a large team which focuses solely on children with sickle cell disease. Our hope is that this event will grow more each year.”

To end the celebration, attendees were able to view a portion of the Texas Children’s Ugandan World Sickle Cell Day Ceremony which featured a song and dance rendered by children. The song’s lyrics aptly captured the spirit of the day – “…let’s come together in the fight for sickle cell!”

Click here to read a blog by Jamilah Cummings, the mother of Joshua, a patient sickle cell disease at Texas Children’s Hospital.

To learn more about Texas Children’s Sickle Cell Center click here.