[YOUR HEALTH] Sickle cell disease (2)

I welcome the esteemed readers of this column to September, the National Sickle Cell Awareness month. It is a time for the public to reflect on the children, teenagers and adults whose lives, education and careers have been affected by this disease.

A regular reader of this column sent me a feedback after the last article and wanted to know whether it is possible for her to have a sickle cell-free child, based on her compressed history as narrated below.

Continue reading after the cut...

“I am 27 years old, with genotype AS and in a stable relationship. My boyfriend and I are planning to get married soon and start raising a family immediately. However, I am worried because my sister has a child with sickle cell disease. They are always in hospital and I fear this child may die anytime. I have never told my boyfriend who also has the genotype AS, for fear of being dumped.”

I know many people say, “Love transcends all,” when it comes to the issue of two carriers having children; but I disagree. Instead, I believe that knowledge is power, and with it comes great responsibilities.

Having a child with sickle cell disease involves significant sacrifices physically, emotionally and financially. While two carriers should not let the trait limit their relationship, it is important to be fully aware of the consequences of having children together.

Before deciding on having a child with someone without accurate confirmation of their genotype, or someone with the sickle cell trait, ask yourself carefully: are you willing to, knowingly, bring a child into this world to watch him/her suffer day in, day out?

Are you willing to lose that partner for whom you are ready to throw caution to the wind, when the crisis assumes life-threatening dimension and possible death? Even if your answers are empathic ‘yes,’ the truth is that the strongest relationships can weaken from caring for a constantly sick child!

While the view expressed above seems harsh, they are the realities of sickle cell disease.

A school of thought believes that intending couples should not sacrifice their relationships since marriage is not all about child bearing.

They also hinge their argument on the fact that sickle cell disease can be better managed now, as it can be detected during conception, pregnancy and also avoided through assisted fertilisation techniques like IVF.

Puberty

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). People with sickle cell go through all the stages of puberty like people without sickle cell. However, people with sickle cell often go through puberty at an older age.

Menstrual period

A study found that girls with sickle cell had their first menstrual period two to three years later than girls without sickle cell. Therefore, on average, a girl with sickle cell disease has her first period around her 15th birthday.

Pregnancy

Women with sickle cell can become pregnant. But it is best to carefully plan when to get pregnant after talking with their family and doctor.

Unexpected or unintended pregnancies can be difficult for anyone, but especially for someone with sickle cell. If they are sexually active, it is strongly recommended that they use contraceptives until they are ready to have a baby.

It is important for all women to get medical care during pregnancy (antenatal care), but it is especially important for pregnant women with sickle cell disease to be closely monitored. This is because some pregnant women with sickle cell experience more problems.

Women with sickle cell disorder are more likely to have babies that are born early (pre-term) and that weigh less than average.

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. The erection can last over four hours and can cause permanent damage to the penis.  If untreated, priapism can lead to impotence.

Men with sickle cell disease are more likely to have problems with fertility. They may have more difficult time getting a woman pregnant because sickle cell disease can affect sperm. That is not to say, however, that men with sickle cell disorder cannot get a woman pregnant and father children. In reality, they do.

• To be concluded.

- Rotimi Adesanya (roayad@yahoo.com)

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