In an effort to increase outreach in to the Latin community in northern Manhattan and the Bronx, the Sickle Cell Thalassemia Patients Network (SCTPN hosted its second English/Spanish Sickle Cell 101 Forum, at the Northern Manhattan I C. The forum is part of SCTPN’s Public Outreach & Education Series (POES).
Sickle cell disease (SCD) is characterized by a group of abnormal hemoglobin traits that cause the red blood cells (RBCs) to lose their round, pliable shapes, to become hard, viscous, and sickled-shaped. The three most common sickle hemoglobin traits in America and worldwide are hemoglobin S trait (Hb S), hemoglobin C trait (Hb C), and hemoglobin Beta Thalassemia (Hb β Thal). Sickle cell traits can be inherited in any combination such as, two S traits result in Hb SS – know commonly as sickle cell anemia. An S and C trait is Hb SC disease, and a S and β Thal traits combine to form Hb Sickle Beta Thalassemia disease.
Sickle cell traits are passed on from one parent to their child. For a child to be born with SCD, she or he must inherit one sickle hemoglobin trait from each parent. There is a 25% chance with each pregnancy that two carriers can have a child with sickle cell disease.
The POES Sickle Cell 101 moderators Mark Goodwin, LCSW, and advocate Ginger Davis, introduced the schedule of speakers which included; Dr. Crystal Leibrand Kaezman, from Emmaus Medical Inc., Dr. Markus Mapara, Weil Cornell, Yovonka De Lemos, Account Representative ans Special Patient Services, Be The Match, Sabrina J. Lewis, CHW, and Velma Allen, Candice’s Sickle Cell Fund, Inc.
Dr. Leibrand Kaezman started the day talking about Endari, a new precision medicinal therapy specifically for SCD. Endari was approved by the FDA in July 2017 for commercial sales, and has been growing its market steadily for the high dose L-glutamine oral preparation that helps children from the age of five, to adults living with sickle cell to reduce acute pain episodes know as crises. Reducing the number of crisis a person has yearly, goes a long way to lowering the risk of organ damage due to vaso-occlusion (blockage of blood flow through small blood vessles). Endari is the first product created specifically. for sickle cell disease that has been approved by the Food and Drug Administration.
Dr. Mapara followed with his presentation on the bone marrow and stem cell transplantation trials that he is leading at Columbia University Medical Center. The three-part clinical trial consists of bone marrow transplants from full sibling-matched donors, stem cell transplants from half matched sibling or unrelated donor. The third modality being used in the trial is Analogous Stem Cell Transplantation. Stem cells are collected from the blood of the individual living with SCD or Thalassemia Major (Cooley’s Anemia), the collection is then sent to the trial’s partner Bluebird Bio, where their patented Gene Replacement Therapy (GRT) is applied, then sent back to the hospital where the genetically modified cells are infused into the patient. We will be providing more in-depth articles on both Endari and the genetherapy strategies for sickle cell disease.
Velma Allen, an Outreach Worker with Candice’s Sickle Cell Fund Inc., a Bronx-based charity that provides academic scholarships for undergraduate studies to young adults with sickle cell disease. Velma started her workshop with a pre-text on hydroxyurea, a widely used medication to reduce the number of sickle cell crises children and adults have annually, and to protect organs from damage as a result of red blood cells sickling, and loss of oxygen to organ tissue.
Be The Match is a program created by the New York Blood Center, to recruit, identify, and connect genetically matched, unrelated bone marrow and stem cell donors to people with certain types of cancers like lymphoma, and genetically inherited conditions like thalassemia whose lives can be saved by a transplant. SCTPN has partnered with Be The Match to educate African American, Caribbean, Latino, and Asian New Yorkers about the desperate need for marrow and stem cell donations from ethnically diverse populations in the city and State. Yovonka De Lemos, succinctly talked about and dispelled the myths in ethnic communities surrounding marrow and stem cell donation. It was good to see attendees pull out their cell phones to go through the process of registering to become a donor.
SCTPN Community Health Worker (CHW) Sabrina J. Lewis, delivered a high-spirited, interactive discussion on Healthy Mind, Body and Spirit. She spoke on self-love, being good to oneself, and taking care of oneself in a holistic fashion. Lewis lead an exercise with the forum participants, having them write down their concerns, and what kind of solutions they could apply to resolve issues that are causing stress and anxiety in their lives.
Ginger Davis, Development Consultant and Advocate, spoke on five practices people can adopt to live healthy with SCD: 1) Have a positive mindset and outlook on life; 2) Eat healthy, natural diet low in sugar, sodium, and processed foods; 3) Stay hydrated with water year-around; 4) Do low impact exercises like walking, stretching, yoga, palates, and tai chi; and 5) Get proper rest, at least 6-hours nightly. Anything less than six hours is not enough, and should be supplemented short naps during the day whenever possible.
The participation by the attendees was so high that Mark Goodwin, Program Coordinator for the organization’s PCORI (Patient-Centered Outcomes Research Institute) funded Transitions and the HRSA Care Coordination Programs, was unable to deliver his presentation on Preparing for the Challenges and Success of Transition (from pediatrics to adult medicine). “We will share more about the transition program in coming weeks through our blog and social media,” said Goodwin.
One gentleman said that he has been to a lot of workshops, seminars, and conferences over the years. However, this was the best. People lingered around after the program ended to share highlights and ask more questions. Several people were ready to answer the call-to-action to help SCTPN with its outreach and advocacy.
“The staff and volunteers will contact everyone who attended Saturday’s forum to talk further about how they can help the organization achieve its objective to increase public awareness of sickle cell disease and other inherited blood disorders, said Sarai Santiago, a Community Health Worker with SCTPN, and Bronx resident. After Mark finishes reviewing the evaluation forms, he will make recommendations for next steps.”
Click on the link to visit the Sickle Cell Thalassemia Patients Network website, where you can learn more about its mission and goals. We invite you to also visit Candice’s Sickle Cell Fund Inc., Emmaus Medical Inc., and Be The Match online to learn more about their programs and services.
SCTPN is a Charter Member of the Sickle Cell Disease Association of America (SCDAA), and recipient of SCDAA’s three year Newborn Screening Care Coordination Grant.
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