Transgender Care and Sickle Cell
About 1.4 million adults in the United States identify as transgender. For transgender adults with sickle cell disease (SCD), necessary transgender care may be hard to access. Racial, gender, and disease stigmas make it hard to find experienced doctors.1
SCD can also make transgender care more complex. Hormone therapy increases the risk of certain complications for people with SCD. Finding doctors knowledgeable about SCD and transgender care can also be difficult.
Understanding how gender identity plays a role in SCD care can help you get the support and treatment you need.
How does gender identity affect access to care?
Transgender people with SCD have the same healthcare needs as everyone else. They also have healthcare needs related to transition and to SCD. People with SCD already face barriers in accessing quality healthcare. Structural racism in the United States leads to lower access for many Black Americans. This leads to:2-4
- Lack of doctors with experience and knowledge treating SCD
- Lack of funding for SCD research
- Poor interactions with doctors in the ER
- Mistreatment by primary care doctors
- Lack of insurance because of unemployment
Transgender identity often further reduces access to healthcare. Some states allow doctors to deny health services to transgender people based on religious beliefs. Many transgender people report:5,6
- Being turned away by doctors
- A lack of doctors who are sensitive or knowledgeable about transgender care
- Verbal and physical abuse from doctors
- Being blamed for their health status by doctors
- Feeling uncomfortable being examined by a doctor or a nurse
- Lack of insurance coverage for transgender services
Finding doctors who understand transgender health issues and SCD can be very difficult. Transgender people with SCD may avoid preventive or emergency care altogether. This can lead to worse health outcomes.5,7
A good place to start searching for doctors is Planned Parenthood. Find your local Planned Parenthood health center for many healthcare services. Some centers also offer hormone treatments.5
How does sickle cell disease affect transgender care?
Many transgender people choose to take gender-affirming hormone therapy. This means they take hormones that align with their gender identity. Hormones can make the body more “masculine” or “feminine” to correspond to someone’s sense of self. Transgender women usually take estradiol. Transgender men usually take testosterone.7,8
Hormone therapy improves mental health and reduces the risk of self-harm for transgender people. However, it also increases the risk of blood clots (thrombosis) and stroke. People with SCD already have a high risk for these complications. This means transgender people with SCD must balance the benefits of hormone therapy with the risk of SCD complications.9
Do not take hormones without supervision from your doctor. Using hormones without medical guidance is dangerous. The risk of blood clots depends on how the hormone is prepared and given, as well as the dosage. Doctors can make sure you safely receive the right therapy. The therapy you receive depends on a number of factors, including:9,10
- Pre-existing complications of SCD, especially blood clots and stroke
- Adherence to SCD treatments
- Additional risk factors for complications
- Social and cultural factors
Only a few case studies of hormone therapy in transgender people with SCD have been published. More studies are needed to know the safest way to provide this care.9
Transgender people have a high risk of depression and anxiety. They may experience an emotional condition called “gender dysphoria.” This refers to discomfort when gender identity differs from sex assigned at birth. Living with gender dysphoria causes serious emotional pain.7,11,12
Another common cause of depression is social isolation. Many transgender people experience bullying or rejection from loved ones during and after transitioning. A lack of a support network increases the risk of self-harm for teenagers and young adults. It also is linked to higher rates of alcohol and drug abuse among transgender people.7,11
Providing access to hormone therapy can improve mental health. One study has shown that access to proper transgender healthcare reduces symptoms of depression. Hormone therapy also is linked to improved body image and higher quality of life.9
People with SCD also have a higher risk of depression and anxiety. Pain, fatigue, and lack of sleep are common causes of depression for people with SCD. Navigating the healthcare system also adds stress and disruptions to daily life.13-15
Depression and anxiety can lead to worse health outcomes. For example, people with SCD who have depression have more frequent hospitalizations, ER visits, and blood transfusions. Steps to take care of your mental health include:16
- Talking to a therapist or counselor about coping skills
- Practicing mindfulness and other self-care techniques
- Maintaining a healthy diet and exercise routine
- Spending time on hobbies
- Finding support groups or supportive networks
Do you have a good relationship with your doctor?