People with sickle cell disease may have special health needs when it comes to starting a family. Sickle cell disease can impact reproductive health in several different ways including delayed puberty, high-risk pregnancy, and even challenges during sex. SCD impacts both sexes in different ways, so it’s important to review the resources below.
People with SCD should also remember that they can pass along their sickle hemoglobin genes to their children. They could have children with sickle cell disease if their partner also has a sickle hemoglobin gene. The chances can be 25%, 50%, or 100% chance of having a baby with sickle cell disease, depending on the genes that the parents have. Therefore, knowing about genetics and knowing your partner’s hemoglobin type are very important parts of reproductive health in sickle cell disease.
There is an organization called the Sickle Cell Reproductive Health Education Directive (SC RED) that helps people with sickle cell disease find resources and learn more about this topic. The mission of SC RED is to make sure people with sickle cell disease get high-quality health care when they want to have children.
You can watch videos about this topic on the SC RED website.
Children with sickle cell disease may grow and develop more slowly than other kids. They usually start puberty later than their friends. For girls with sickle cell disease, this can mean getting their first period later than other girls.1
The medicine hydroxyurea can significantly help people with sickle cell disease, but doctors are still learning how it affects when girls get their first period.
Fertility is a person’s ability to have children. Many women with sickle cell disease are still able to have children. However, it’s important to understand the connection between certain SCD treatments and fertility.
Hydroxyurea helps people with sickle cell disease by reducing the number of pain crises and helping with other symptoms. Some people worried it might make it harder for women to have children. But a new study shows that hydroxyurea doesn’t hurt a woman’s ability to have children. This means women don’t need to save their eggs before taking this medicine.3
However, some stronger treatments can make it harder to have babies. Before getting a bone marrow transplant or gene therapy, patients have to go through chemotherapy. This medicine can sometimes make it hard for people to have children later.
Not everyone will have trouble having children after these treatments, but it could happen. Many women choose to save their eggs or ovarian tissue before getting these treatments. Doctors freeze the eggs or tissue so women can use them later if they want to try to have children.4
Sexual health is an important part of staying healthy overall. Sexual health is also very important for those living with SCD. Learning how to prevent sexually transmitted infections (STIs), pick the right birth control, and talk openly with partners helps you make smart choices about your body and relationships.
There are many types of birth control5 that you should talk about with a doctor or nurse.
Here are some examples:
Hormonal birth control does more than just prevent pregnancy. It can also:
The CDC has suggestions6 about which birth control methods are safe for people with different health conditions. For example, some birth control methods increase the chance of getting blood clots, and people with SCD already have a higher risk of blood clots, heart attacks, and strokes. While there are risks associated with certain birth control methods and SCD, pregnancy is also high-risk for people living with SCD. So, it’s important to always talk to your doctor about what’s best for you.
If you’re sexually active, you should get tested for STIs regularly. How often7 depends on your situation. People with multiple partners or partners they don’t know well should get tested more often. You can find testing locations online. Click here to find HIV, STI, and viral hepatitis testing and vaccine locations.
Sometimes sickle cell disease can make it harder to enjoy sexual activity. This is called sexual dysfunction, and it happens to people without sickle cell disease too. Check out this article to read more about how SCD can impact sexual activity and intimacy.
When women with sickle cell disease get pregnant, it is considered “high-risk.” This means there’s a higher chance of problems happening, such as:
Because of these risks, women with sickle cell disease who are pregnant need special care from two types of doctors: an obstetrician (a doctor who specializes in pregnancy and birth) and your regular hematologist or SCD specialist.
Women living with SCD who want to have a baby should talk to their doctor before trying to get pregnant. The doctor will:
With good planning and regular doctor visits, women with sickle cell disease can have healthy pregnancies.8
The Sickle Cell Reproductive Health Education Directive (SCRED) offers a free, self-paced online course on preconception and pregnancy called, “Planning for Pregnancy with SCD.”
SCD and Pregnancy Fact Sheets:
Menopause is when a woman’s periods stop forever. During menopause, the body stops releasing eggs, which means the woman can no longer get pregnant. Menopause usually happens when women are between 40 and 50 years old. Some common symptoms that happen during menopause include:
Learn more about menopause here.9
Sickle cell disease (SCD) can change how women go through menopause. Women with SCD may:
People with SCD are more likely to have early menopause. SCD treatments might help prevent early menopause. One study found that people taking hydroxyurea medicine regularly started menopause around age 50 while people not taking any SCD medicine started menopause around age 39.10
Many women use hormone replacement therapy (HRT) to help with menopause symptoms. However, doctors usually don’t recommend HRT for people with SCD because it increases the chance of getting blood clots, and people with SCD already have a higher risk of blood clots, heart attacks, and strokes
Always talk to your SCD doctor before trying any menopause treatments.
Chronic anemia can slow down growth. Boys with SCD may also go through puberty later than other boys their age. They may be about 2-3 years behind in puberty. This means they might be later to develop:
Because of these delays, boys with sickle cell disease may:
This is normal for boys with sickle cell disease, but it can sometimes make them feel different from their friends.11
Sexual health is an important part of staying healthy overall. Sexual health is also very important for those living with SCD. Learning how to prevent sexually transmitted infections (STIs), pick the right birth control, and talk openly with partners helps you make smart choices about your body and relationships.
There are many types of birth control5 that you should talk about with your partner(s).
Here are some examples:
Hormonal birth control does more than just prevent pregnancy. It can also:
If you’re sexually active, you should get tested for STIs regularly. How often7 depends on your situation. People with multiple partners or partners they don’t know well should get tested more often. You can find testing locations online. Click here to find HIV, STI, and viral hepatitis testing and vaccine locations.
Sometimes sickle cell disease can make it harder to enjoy sexual activity. This is called sexual dysfunction, and it happens to people without sickle cell disease too. Check out this article to read more about how SCD can impact sexual activity and intimacy.
Patients and families should watch for the following conditions that need an urgent medical evaluation:
• Fever of 101° F or higher
• Chest pain
• Shortness of breath
• Increasing tiredness
• Abdominal swelling
• Unusual headache
• Any sudden weakness or loss of feeling
• Pain that will not go away with home treatment
• Priapism (painful erection that will not go down)
• Sudden vision change
People with sickle cell disease may have special health needs when it comes to starting a family. Sickle cell disease can impact reproductive health in several different ways including delayed puberty, high-risk pregnancy, and even challenges during sex. SCD impacts both sexes in different ways, so it’s important to review the resources below.
People with SCD should also remember that they can pass along their sickle hemoglobin genes to their children. They could have children with sickle cell disease if their partner also has a sickle hemoglobin gene. The chances can be 25%, 50%, or 100% chance of having a baby with sickle cell disease, depending on the genes that the parents have. Therefore, knowing about genetics and knowing your partner’s hemoglobin type are very important parts of reproductive health in sickle cell disease.
There is an organization called the Sickle Cell Reproductive Health Education Directive (SC RED) that helps people with sickle cell disease find resources and learn more about this topic. The mission of SC RED is to make sure people with sickle cell disease get high-quality health care when they want to have children.
You can watch videos about this topic on the SC RED website.
Children with sickle cell disease may grow and develop more slowly than other kids. They usually start puberty later than their friends. For girls with sickle cell disease, this can mean getting their first period later than other girls.1
The medicine hydroxyurea can significantly help people with sickle cell disease, but doctors are still learning how it affects when girls get their first period.
Fertility is a person’s ability to have children. Many women with sickle cell disease are still able to have children. However, it’s important to understand the connection between certain SCD treatments and fertility.
Hydroxyurea helps people with sickle cell disease by reducing the number of pain crises and helping with other symptoms. Some people worried it might make it harder for women to have children. But a new study shows that hydroxyurea doesn’t hurt a woman’s ability to have children. This means women don’t need to save their eggs before taking this medicine.3
However, some stronger treatments can make it harder to have babies. Before getting a bone marrow transplant or gene therapy, patients have to go through chemotherapy. This medicine can sometimes make it hard for people to have children later.
Not everyone will have trouble having children after these treatments, but it could happen. Many women choose to save their eggs or ovarian tissue before getting these treatments. Doctors freeze the eggs or tissue so women can use them later if they want to try to have children.4
Sexual health is an important part of staying healthy overall. Sexual health is also very important for those living with SCD. Learning how to prevent sexually transmitted infections (STIs), pick the right birth control, and talk openly with partners helps you make smart choices about your body and relationships.
There are many types of birth control5 that you should talk about with a doctor or nurse.
Here are some examples:
Hormonal birth control does more than just prevent pregnancy. It can also:
The CDC has suggestions6 about which birth control methods are safe for people with different health conditions. For example, some birth control methods increase the chance of getting blood clots, and people with SCD already have a higher risk of blood clots, heart attacks, and strokes. While there are risks associated with certain birth control methods and SCD, pregnancy is also high-risk for people living with SCD. So, it’s important to always talk to your doctor about what’s best for you.
If you’re sexually active, you should get tested for STIs regularly. How often7 depends on your situation. People with multiple partners or partners they don’t know well should get tested more often. You can find testing locations online. Click here to find HIV, STI, and viral hepatitis testing and vaccine locations.
Sometimes sickle cell disease can make it harder to enjoy sexual activity. This is called sexual dysfunction, and it happens to people without sickle cell disease too. Check out this article to read more about how SCD can impact sexual activity and intimacy.
When women with sickle cell disease get pregnant, it is considered “high-risk.” This means there’s a higher chance of problems happening, such as:
Because of these risks, women with sickle cell disease who are pregnant need special care from two types of doctors: an obstetrician (a doctor who specializes in pregnancy and birth) and your regular hematologist or SCD specialist.
Women living with SCD who want to have a baby should talk to their doctor before trying to get pregnant. The doctor will:
With good planning and regular doctor visits, women with sickle cell disease can have healthy pregnancies.8
The Sickle Cell Reproductive Health Education Directive (SCRED) offers a free, self-paced online course on preconception and pregnancy called, “Planning for Pregnancy with SCD.”
SCD and Pregnancy Fact Sheets:
Menopause is when a woman’s periods stop forever. During menopause, the body stops releasing eggs, which means the woman can no longer get pregnant. Menopause usually happens when women are between 40 and 50 years old. Some common symptoms that happen during menopause include:
Learn more about menopause here.9
Sickle cell disease (SCD) can change how women go through menopause. Women with SCD may:
People with SCD are more likely to have early menopause. SCD treatments might help prevent early menopause. One study found that people taking hydroxyurea medicine regularly started menopause around age 50 while people not taking any SCD medicine started menopause around age 39.10
Many women use hormone replacement therapy (HRT) to help with menopause symptoms. However, doctors usually don’t recommend HRT for people with SCD because it increases the chance of getting blood clots, and people with SCD already have a higher risk of blood clots, heart attacks, and strokes
Always talk to your SCD doctor before trying any menopause treatments.
Chronic anemia can slow down growth. Boys with SCD may also go through puberty later than other boys their age. They may be about 2-3 years behind in puberty. This means they might be later to develop:
Because of these delays, boys with sickle cell disease may:
This is normal for boys with sickle cell disease, but it can sometimes make them feel different from their friends.11
Sexual health is an important part of staying healthy overall. Sexual health is also very important for those living with SCD. Learning how to prevent sexually transmitted infections (STIs), pick the right birth control, and talk openly with partners helps you make smart choices about your body and relationships.
There are many types of birth control5 that you should talk about with your partner(s).
Here are some examples:
Hormonal birth control does more than just prevent pregnancy. It can also:
If you’re sexually active, you should get tested for STIs regularly. How often7 depends on your situation. People with multiple partners or partners they don’t know well should get tested more often. You can find testing locations online. Click here to find HIV, STI, and viral hepatitis testing and vaccine locations.
Sometimes sickle cell disease can make it harder to enjoy sexual activity. This is called sexual dysfunction, and it happens to people without sickle cell disease too. Check out this article to read more about how SCD can impact sexual activity and intimacy.
Patients and families should watch for the following conditions that need an urgent medical evaluation:
• Fever of 101° F or higher
• Chest pain
• Shortness of breath
• Increasing tiredness
• Abdominal swelling
• Unusual headache
• Any sudden weakness or loss of feeling
• Pain that will not go away with home treatment
• Priapism (painful erection that will not go down)
• Sudden vision change