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Sickle Cell Disease Program
Sickle cell Transition Education Project (STEP)

Sexual Health




Puberty and sickle cell disease
Puberty is the word used to describe the physical changes that occur as a child’s body becomes an adult body capable of reproduction (having babies). Read more about puberty on kidshealth.org.

How does having sickle cell affect puberty?
People with sickle cell go through all the stages of puberty like people without sickle cell. Usually, the age you start puberty is similar to others in your family. However, people with sickle cell often go through puberty at an older age.

It can be tough not being as tall or as developed as other teenagers your age.  Many people (not just people with sickle cell) go through puberty at an older age.  You should not feel bad about yourself because your body is changing more slowly than others. It is normal to feel awkward about your body at times, but you should not constantly worry about it. If you are concerned about your pubertal development, talk to your doctor.  

Menstrual Cycle (Period)

For example, one study found that girls with SS sickle cell had their first menstrual period 2.4 years later than girls without sickle cell, and girls with SC sickle cell had their period 0.5 years later. Today in the U.S., the average girl has her first period around age 12.5 years. Therefore, on average, a girl with SS sickle cell has her first period around her 15th birthday. These ages are averages, and many girls have their first period over a year before or after these average ages and are still completely normal.

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Pregnancy and Sickle Cell Disease

Can I get pregnant if I have sickle cell disease?

Yes. Women with sickle cell can become pregnant. It is important for all women to get medical care during pregnancy (called prenatal care), but it is especially important for pregnant women with sickle cell to be followed closely by a high-risk OB/GYN doctor and sickle cell hematologist. Some pregnant women with sickle cell experience more problems.

Can I have healthy children if I have sickle cell disease?
Yes. While women with sickle cell are more likely to have babies that are born early (pre-term) and that weigh less than average, most children are healthy.  However, your child could also have sickle cell disease. See the genetics section to learn more.
 
When is the best time for me to get pregnant if I have sickle cell disease?
This answer will be different for everyone. The best time will depend on many things including your age, your personal health, your goals in life, and your support system. However, it is best to carefully plan when you want to try to get pregnant after talking with your family and doctor. Unexpected or surprise pregnancies can be difficult for anyone but especially for someone with sickle cell. If you are having sex, it is strongly recommended that you use birth control until you are ready to have a baby.

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Birth Control and Sickle Cell Disease

What is birth control?
Birth control (also called contraception) is a medicine, device, or practice that reduces the chance of pregnancy.  Birth control medicine contains one or two hormones that affect the normal menstrual cycle to prevent pregnancy. 

See the links below for more information on birth control:

What form of birth control should I use?
All people who do not want to get pregnant should use condoms. Condoms are the only birth control method that also protect against sexually transmitted infections.

In general, all women who do not want to get pregnant should use another birth control method in addition to condoms since condoms can fail.

Depot medroxyprogesterone acetate (DMPA), also called “the shot,” is the best studied form of birth control for women with sickle cell disease. DepoProvera is an injection containing only one hormone, a type of progesterone (no estrogen), that you receive every three months at your doctor’s office. In addition to preventing pregnancy, DepoProvera seems to have additional benefits just for women with sickle cell. Women with sickle cell disease who took DepoProvera had less pain crisis episodes than women who did not take DepoProvera.

Most women with sickle cell can usually safely use most forms of birth control.  However, some birth control methods, including most oral contraceptive pills, contain the hormone estrogen, which can increase the risk of blood clots and stroke. Limited formal research has been done to know for sure if birth control containing estrogen is safe for women with sickle cell disease. Despite this lack of research, women with sickle cell disease have taken birth control containing estrogen without experiencing problems.

You should talk more to your doctor about which birth control method is right for you.  

I am not on birth control and had sex yesterday without a condom.  Is there anything I can do to prevent getting pregnant?
Yes. Emergency contraception (also called Plan B) is a progesterone-only hormone pill that a woman can take after unprotected sex to decrease the chance that she will get pregnant. Women must take the emergency contraception pill within 72 hours after unprotected sex to prevent pregnancy (the sooner you can take it, the better). Women with sickle cell can safely take emergency contraception.

Read more about Plan B:


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Priapism

What is priapism?
Priapism is an unwanted, prolonged erection of the penis. It can last for hours and often causes pain. Priapism does not occur because of sexual feelings or desires. Rather it occurs when red blood cells sickle and change the chemistry of the blood, causing a blockage of normal blood flow draining from the penis.

Why should I care about priapism?
An erection that lasts over four hours can cause permanent damage to the penis.  If untreated, priapism can cause impotence, which means that a man is unable to have an erection for sex.

What should I do if I have an erection that won’t go down?
If you have a persistent erection, you should:
  1. Try to urinate.
  2. Drink plenty of fluids.
  3. Take pain medicine.

If the erection lasts longer than one hour then you need to immediately go to the emergency room. At the ED, you should receive IV fluids and pain medicine. If the erection remains, then an urologist (a surgeon who specializes in the penis) may need to give you an injection.

It is very important to go to the hospital if you have priapism. Do not ignore it or try to just deal with it at home.  If you have priapism and wait more than two hours to go to the ED, you could cause irreversible and severe damage to your penis. Priapism is serious and not your fault; do not feel embarrassed to get help for it.

Does priapism follow a pattern?
It often occurs as a severe long episode requiring hospitalization and follows multiple shorter episodes, termed “stuttering.” Episodes most often come from infection or normal night-time erections. Onset in the early morning, awakening the patient, is common.

Is it safe for me to masturbate?
Generally, priapism is not related to sexual activity. Rather, it often occurs during sleep. However, priapism can sometimes occur after sex. Despite this fact, masturbation is safe and usually does not cause priapism. If you have any concerns about having sex or masturbation, talk to your doctor.

Will I be able to father children?
Men with sickle cell disease are more likely to have problems with fertility. Men with sickle cell disease may have a more difficult time getting a woman pregnant because sickle cell disease can affect sperm. However, men with sickle cell can get a woman pregnant and father children. If you have concerns about your ability to father a child, talk to your doctor.


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Genetic Counseling and Sickle Cell Disease

If I have a child what are the chances that my child will also have sickle cell disease?

The chances of having a child with sickle cell disease, if you have sickle cell disease, depends on the type of sickle cell disease that you have (SS, SC, Sβthal) and your partner’s hemoglobin genes. Since there are different types of sickle cell disease and hemoglobin, it is best for a genetic counselor or doctor to personally explain your specific chances of having a child with sickle cell disease based on you and your partner’s hemoglobin types.

In general, these are the guidelines for a person with sickle cell disease:
  • If your partner also has sickle cell disease, then there is close to a 100 percent chance that your child will have sickle cell disease.
  • If your partner has a form of sickle cell trait, then there is a 50 percent chance that your child will have sickle cell disease.
  • If your partner does not have sickle cell disease or trait, then there is a close to zero percent chance that your child will have sickle cell disease.

I have sickle cell disease (SS) and my partner has trait (AS).  We have already had one child with sickle cell disease (SS). If we have another child, is he/she more likely or less likely to have sickle cell disease?

Remember that the chance that your child will have sickle cell disease is independent for each pregnancy—meaning that it does not matter if your previous child did or did not have sickle cell disease. The chance that the above person would have a child with sickle cell disease is 50 percent.    

What should I do if there is a chance my child could have sickle cell disease?

Some people may tell you not to have children. Others may tell you to only have children with someone who doesn’t have trait. But what if you fall in love with someone who does have trait? There are many important features that you look for in a partner, and whether or not they have sickle trait may not rank high on your list, and it certainly doesn’t have to. These are tough questions and issues, and there is no right answer. You need to think about the chances and discuss it with your partner before you have children.
 
Most importantly, you should choose to have children with someone who loves you, understands you, and plans to be with you for a lifetime. Having children is a huge responsibility, and you want to make sure that you and your partner are in a position to provide for your children’s needs, which includes having a stable and loving home. Once you are ready, you should meet with a genetic counselor or doctor. He or she can provide more information about your specific chance of having a child with sickle cell disease and the options you have to deal with that chance. There is no one correct choice; the answer is different for each couple, and each couple makes decisions for different reasons. It is important that you take the time to consider the options, and make the choice that is right for you and your partner.


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