The US Virgin Islands (USVI) is a group of islands with a culturally diverse population of about 90,000 US citizens. The territory consists of three main islands: St. Thomas, St. John, and St. Croix, as well as several dozen smaller islands . One of the most common health challenges in USVI is sickle cell anemia and other health conditions related to red blood cell production. In addition to those genetic conditions, there are a number of other special health care needs in the USVI community that can be caused by changes in our genetic information. USVI also has a territory-run Newborn Screening (NBS) program, as do all US states and territories. The USVI program screens for over 30 genetic conditions, including Sickle Cell Anemia. Health care providers help families learn whether genetic changes may explain the health conditions in their family and connect families to appropriate care. There are currently no genetics clinics on the island but below are some resources to help you learn more and have conversations with your local doctors and nurses.
Resources for Children and Families with Genetic Conditions in USVI:
You are here because you are concerned about your child’s speech, learning and development, movement, growth, physical features, digestive or feeding issues, behavior, vision, hearing, heart defect, or any other complicated medical problem. You may also be here because you or your partner have been told you have a higher chance to have a child with a health issue, you have a family member with a genetic condition, or you believe your family’s medical issue could have a genetic explanation. Whatever it was that brought you to this page, we want to help you get connected to the right information and services for your child.
How can a genetics referral help my child?
- Your genetics are responsible for making you, you. We inherit all of our genetics from our biological mom and dad. Sometimes, we have changes in our genetics that can cause certain symptoms, cancer, or conditions.
- Meeting with a genetics team can help you identify the cause of a specific problem, the risk your child may have at developing certain conditions, and/or the risk other family members may have at also inheriting this disease. Finding a genetic cause can provide answers, information for others in the family, and even qualify your child for specific treatments. Conversely, not finding a genetic cause can help rule out a lot of conditions when looking for a diagnosis.
- If you are thinking of becoming pregnant, you can meet with a prenatal genetic counselor. You may be interested or referred to prenatal genetic services if you have an abnormal ultrasound, a family history of a specific condition, infertility, older age, curiosity, carrier screening, and many more.
What happens at a genetics appointment?
- At a genetics appointment, you will often meet with a genetic counselor first. They will ask you detailed questions about your family history, you or your child’s medical history, and your child’s developmental history. Often a doctor will join the session to do a physical exam. You will likely be offered genetic testing.The genetic counselors are trained in both genetics and counseling, so they will work with you to help make the best decision for you. Of note, every session can be slightly different!
- If you are attending a prenatal genetics appointment, the appointment will be very similar to the one outlined above. However, the genetic testing options you may be offered typically include screening tests, such as NIPT and carrier screening, or diagnostic tests such as an amniocentesis or a CVS (chorionic villus sampling).
What information should I gather before I meet with genetics?
- It is helpful to have your detailed family health history, especially any information on people with a similar diagnosis or symptoms. It would also be helpful to gather any questions you may have.
- Why do we ask you about your family health history? Find out here Your family health history
How do I find a genetics specialist in my area?
There are currently no genetics clinics on the island. We encourage you to bring your questions about genetics to your local doctors and nurses and talk with them about ways to get answers to your questions and concerns.
Explore other genetics resources for patients and families: Patients & Families | NYMAC (nymacgenetics.org)
According to the American Cancer Society, cancer is a common disease, and approximately 1 in 3 people will develop cancer in their lifetime. However, about 5-10% of all cancers have a hereditary cause. This means there is a change in a gene that is making some people more susceptible to developing a specific type of cancer, and this change is being passed down generation to generation.
Why see a genetic counselor?
- You may be interested or referred to cancer genetic services if you have a personal diagnosis of cancer or a strong family history of cancer. Typically, cancer genetics focuses on cancer at young ages, multiple types of cancer in the same person, the same cancer throughout a family, and specific types of cancer such as breast, ovarian, colon, and endometrial cancers. A genetic counselor can help assess if the cancer in the family is hereditary, they can identify who in the family is at risk of inheriting a hereditary cancer, and they can discuss cancer screening recommendations for those at an increased risk.
When should I be concerned that the cancer in my family is hereditary?
- Some “Red Flags”
- Young age at cancer diagnosis (before the age of 50)
- Multiple cancer diagnoses in the same person
- Multiple people on the same side of the family with the same cancer diagnosis (especially if it is a rare type of cancer)
- Cancers occurring in both pairs of an organ system (for example, having cancer in both breasts)
What are some common hereditary cancer syndromes?
- Hereditary Breast and Ovarian cancer syndromes
- Genetic changes in specific genes, such as the BRCA1 or BRCA2 genes, can predispose someone to an increased risk of developing breast and/or ovarian cancer
- Lynch syndrome
- There are a few genes responsible for Lynch syndrome. Having a genetic change in any of these genes can predispose someone to an increased risk of developing colon and/or endometrial cancer.
- Li Fraumeni syndrome
- Genetic changes in the TP53 gene can predispose someone to an increased risk of developing more than one type of cancer, including brain and/or breast cancer, osteosarcoma, soft-tissue sarcoma, adrenocortical carcinoma and leukemia.
How can I find a genetics specialist in my area?
There are currently no genetics clinics on the island. We encourage you to bring your questions about genetics to your local doctors and nurses and talk with them about ways to get answers to your questions and concerns
Explore other genetics resources for patients and families: Patients & Families | NYMAC (nymacgenetics.org)
You are here because you are concerned about you or a family member. This concern can be due to cancer, unexplained sudden death, kidney disease, diabetes (without typical risk factors), epilepsy, severe vision problems, hearing issues, movement disorders, anemias (low blood counts), unusual childhood conditions, or any other complicated medical issues. Whatever it was that brought you to this page, we want to help you get connected to the right information and services for you and your family.
Why see a genetic counselor?
- You may be interested or referred to genetic services if you have a specific condition or symptom that indicates there could be a genetic cause. A genetic counselor can help assess if the health issue in your family is hereditary and caused by genetics, identify who else in the family is at risk, and discuss the available testing and screening recommendations to those at risk.
What types of conditions may be inherited?
NOTE: This is not a comprehensive list of conditions, however, below is information on some conditions that affect these body systems.
- Cancer
- Unusual childhood conditions
How do I find a genetics specialist in my area?
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There are currently no genetics clinics on the island. We encourage you to bring your questions about genetics to your local doctors and nurses and talk with them about ways to get answers to your questions and concerns
Explore other genetics resources for patients and families: Patients & Families | NYMAC (nymacgenetics.org)
It is important to know if you have sickle cell trait. About 1 out of every 12 African Americans has sickle cell trait and about 1 out of every 100 Hispanics has sickle cell trait. However, it is possible for a person of any race or nationality to have sickle cell trait. Please click on the links below for more information:
Information on Sickle Cell Trait
Sickle cell trait cannot turn into sickle cell disease. Most people with sickle cell trait have no health issues. Some people with sickle cell trait may occasionally have blood in their urine and an increased risk of urinary tract infections. Rarely, people with sickle cell trait can have pain episodes if they become dehydrated, go to places with low oxygen levels such as deep sea diving or are at very high altitudes.
A person with sickle cell trait can have a child with sickle cell disease, a serious medical condition that requires lifelong treatment and monitoring by a knowledgeable healthcare provider. It is important for a person with sickle cell trait to get their partner tested before having children.
Nemours Kids Health:
CDC: https://www.cdc.gov/ncbddd/sicklecell/traits.html
Sickle Cell Trait: What You Need to Know (Tri-fold brochure)
Sickle Cell Trait: What You Need to Know (8.5 x 11 flyer)
Information on Sickle Cell Disease
Sickle cell disease is a serious medical condition that requires lifelong treatment and monitoring by a knowledgeable healthcare provider. People with sickle cell disease often have anemia, frequent pain episodes, and infections.
Management of sickle cell disease focuses on preventing infections and treating and avoiding pain crises. Some patients may require red blood cell transfusions. With proper management people with sickle cell disease can do well.
Sickle Cell Disease (8.5 x 11 flyer)
Information about family planning and reproductive options for people who have sickle cell trait or sickle cell disease
Information about other red blood cell conditions
- Hemoglobinopathies-overview
- Alpha-Thalassemia
- Beta-Thalassemia
- Hemoglobin C Trait
- Hemoglobin D Trait
- Hemoglobin E Trait
- Variant Hemoglobin Trait
Additional information or support for people with this condition
For additional information or support for people with this conditions, please contact the following patient advocacy organizations:
- Sickle Cell Disease Association of American (www.sicklecelldisease.org )
- Sickle Cell Thalassemia Patient Network (sctpn.net )
- Cooley’s Anemia Foundation (www.cooleysanemia.org )
- Northern California Comprehensive Thalassemia Center at UCSF Benioff Children’s Hospital (thalassemia.com )
ExpectingHealth: Expecting Health works collectively with organizations, healthcare professionals, people, and communities to provide the right information at the right time – from planning a pregnancy to early infant care. Here are some helpful resources: ExpectingHealth.org
- Navigate Newborn Screening Resource Toolkit
- Navigate Newborn Screening Prenatal Flipbook
- Out of range newborn screening video
- New Navigate NBS Video Education Series
USVI Department of Health (DOH): The USVI DOH is an agency of the government of USVI responsible for public health issues. It works to support and improve the health and safety of all USVI citizens through disease prevention, access to care, quality management, and community engagement. United States Virgin Islands Department of Health (doh.vi.gov)
Newborn Screening: USVI screens newborn infants for conditions that can cause serious illness, developmental delays, and even death if not detected in the first few weeks of life. Newborn Screening (babysfirsttest.org)
USVI Infants and Toddlers Program: The Virgin Island Infants and Toddlers Program (ITP) is a territory wide, family-centered, multi-disciplinary system of early intervention services for infants and toddlers from birth through two years of age who have disabilities or developmental delays. United States Virgin Islands Infants and Toddlers Program (doh.vi.gov)
USVI Department of Humans Services: This office administers the Division of Disabilities, Vocational and Rehabilitation Services that provide programs to assist individuals with disabilities, physical or mental impairments that constitute or result in substantial impediment(s) to employment, by providing those services which will help them to achieve an employment outcome. United States Virgin Islands Department of Humans Services (dhs.giv.vi)
Virgin Islands Developmental Disabilities Council, Inc. (VIDDC): Promotes and supports Virgin Islanders with developmental and intellectual disabilities in their communities through advocacy, capacity building and system change. Virgin Islands Developmental Disabilities Council, Inc. (viddc.org)
Maternal and Child Health/Children with Special Health Care Needs (MCH/CSHCN) programs assist the Virgin Islands in maintaining and strengthening its efforts to improve the health of all mothers, infants, and children, including children with special health care needs. Maternal and Child Health/Children with Special Health Care Needs (doh.vi.gov)
USVI Medicare and Medicaid: The Virgin Islands State Health Insurance Assistance Program (VI SHIP) is the Virgin Islands local Medicare source, which is locally administered by the Office of the Lieutenant Governor and federally funded by the Centers for Medicare and Medicaid Services (CMS). Medicaid is health care assistance that helps people with low incomes and limited resources to obtain medical care for some or all of their bills. Medicaid also helps to pay for nursing home care. Medicaid programs differ from state to state. In the U.S. Virgin Islands, Medicaid is called the Medical Assistance Program (MAP). The Department of Human Services Bureau of Health Insurance and Medical Assistance is the division responsible for administering Medicaid in the Virgin Islands. United States Virgin Islands Medicare and Medicaid (ltg.gov.vi)
Resources for Providers
WEBINAR: Act Early-Genetic Contributions to the Developmental Journey
This is a Webinar for Early Childhood Professionals Presented by NYMAC In Collaboration with University of the Virgin Islands.
