7-2-1 by The Foundation For Women and Girls With Blood Disorders

In this episode of The 7-2-1, Dr. Kemi Olaiya and Dr. Cheryl Mensah continue the conversation on fertility preservation in sickle cell disease with Dr. Leslie Appiah, a leading expert in fertility preservation. Together, they break down what patients, families, and providers need to know, from insurance coverage and the hematologist’s role, to special considerations like hydration, anesthesia risks, and ovarian hyperstimulation syndrome. The discussion also explores how common sickle cell treatments such as hydroxyurea and iron chelation impact fertility preservation decisions. This episode offers practical insights for clinicians and families navigating complex choices around preserving fertility in the context of curative therapies.

In this episode of The 7-2-1, Dr. Kemi Olaiya and Dr. Cheryl Mensah are joined by Dr. Leslie Appiah, a leading expert in fertility preservation, to discuss why fertility preservation matters for people with sickle cell disease. While offering curative potential, they explore how stem cell transplantation and gene therapy can also pose serious risks to reproductive health. The conversation covers options available to both prepubertal and post-pubertal girls, the differences in fertility risks between transplant and gene therapy, and why referrals don’t always happen as often as they should. This episode provides essential guidance for clinicians, patients, and families navigating the intersection of sickle cell care, future family planning, and quality of life.

In our latest episode, we are diving deep into the real talk about periods - why stigma around menstrual bleeding exists, where it comes from, and how we can challenge it together.  We’re thrilled to be joined by Dr. Angela Weyand, pediatric hematologist, and associate professor at the University of Michigan medical school. For the past 9 years, she has co-directed a combined hematology/gynecology program that focuses on hemostatic and thrombotic disorders that impact women and girls and those with the potential to menstruate. She’s passionate about tackling iron deficiency, health equity, and on top of all that – she is a powerhouse on social media, educating and advocating under the handle “shematologist”.  With years of experience at the intersection of blood disorders and reproductive health, Dr. Weyand breaks it all down and shares more about the history, the science, and the social impact of menstrual stigma and what we can do to shift the conversation. Whether you’re curious, or just ready to break the taboo, this is an episode you won’t want to miss.

Our guest for Episode 10 is Dr. Amanda Jacobson Kelly, who is an assistant professor of pediatrics in the division of hematology oncology at Nationwide Children's Hospital and the Ohio State University College of Medicine. Dr. Jacobson Kelly will be continuing the conversation from Episode 9: Let’s Iron It Out, focusing this time on intravenous (IV) iron.

In our ninth podcast, "Let's Iron it Out", Our guest is Dr. Amanda Jacobson-Kelly, who is an assistant professor of pediatrics in the division of hematology oncology at Nationwide Children's Hospital and the Ohio State University College of Medicine. We will discuss the diagnosis and management of iron deficiency and iron deficiency anemia.

In our 8th episode, we continue the conversation from Episode 7: Reproductive Health and Sickle Cell Disease. Joining our hosts, Dr. Sweta Gupta and Dr. Tricia Huguelet, are two guests – Dr. Zachary Ramsay and Dr. Christy Bemrich-Stolz, who share their experience both as researchers and clinicians in treating sickle cell disease.

Although we have made leaps and strides in the treatment of sickle cell disease with the development of several disease-modifying medications and gene therapies, as physicians we still grapple with basic health issues, specifically for young girls and women, including – menstrual pain, fertility, maintaining a healthy pregnancy, and positive outcomes for mother and baby.

As we closed 2023, the Food and Drug Administration (FDA) approved two gene therapies to treat sickle cell disease (SCD). These potential curative therapies include CASGEVY™ (exagamglogene autotemcel [exa-cel]) from Vertex Pharmaceuticals Incorporated and CRISPER Therapeutics, and LYFGENIATM from bluebirdbio. While there is a lot of excitement for these advances, the impacts of these therapies are not currently known. Like with many therapies, the impact on women and their future fertility are among the unknowns and are areas of concern for individuals living with sickle cell disease and their healthcare providers.

As physicians taking care of young girls and women with HMB, we are often faced with a challenging patient who is at a high risk for developing thrombosis due to a family history, a past personal history of thrombosis or medical conditions that could be a trigger for developing blood clots. In this podcast, we will be speaking with our experts on thrombosis and HMB to help us navigate through these difficult decision-making scenarios. We will be referring to certain brand names of hormonal therapies as our listeners are familiar with those rather than the complicated generic nomenclature. We will use gender-neutral language whenever possible, but when discussing the results of clinical studies, we may refer to women or girls because that is the language specifically used by the authors. 

The pill aka “oral contraceptive pill, OCP “, “birth control pill” is a misnomer when used solely for HMB by a pre-teen or teenager and unfortunately, can be associated with a stigma. In the true sense, pill used for heavy period flow is in fact hormonal therapy. We will be referring to the pill also as hormonal therapy during this discussion and will clarify several misconceptions about it, thereby hoping for a wider acceptance of these medications.

In this episode, your hosts continue to explore some great information and facts about the use of IUDs for heavy menstrual bleeding and are joined by a well-known expert in the fields of adolescent medicine and reproductive health, Dr. Claudia Borzutzky.

Recently, there has been a lot of talk about IUDs. As healthcare professionals, we are seeing more and more providers prescribing them as hormonal therapy for bleeding disorders. In this episode, your hosts discuss demystifying IUDs with Dr. Patricia Huguelet, Associate Professor and Chief of Pediatric and Adolescent Gynecology at Children’s Hospital Colorado.

For years, providers have heard their patients say, “But my period has always been this heavy. That’s normal for me.” But what does “normal” even mean when we talk about periods? In this episode, your hosts discuss how to differentiate normal vs. heavy menstrual bleeding and tell you more about how heavy menstrual bleeding could be a sign of an underlying bleeding disorder. They also speak to a mother and daughter team about their experiences with normal vs. heavy.