Reproductive Health and Sickle Cell Disease by Ssebandeke Ashiraf

It’s my pleasure to introduce my 2^nd guest writer for this blog, my new friend, Warrior Ssebandeke Ashiraf, who joined sickle cell advocacy at the young age of 14 years after realizing the ignorance about sickle cell in his community. In 2012, after his 2^nd year in university, he joined sickle cell association of Uganda that was driven by his passion to learn and understand sickle cell better. With knowledge and better understanding, he managed to joined Sickle Cell Warrior USA as a Uganda Team Leader.

Ashiraf graduated in Bachelor of information and office management at Marakere University Bussiness School in 2013. He is the country reresntative and Kampala Correspondant for Africa Sickle Cell News and World report Nigeria. He is currently working as public Relations Officer of Sickle Cell Network Uganda (SCNU) which he co-founded in 2013.

SCNU is a sickle cell advocacy organization with an aim in improving the quality of lives of Sickle Cell warriors. His bigger vision is to realise a sickle cell free generation. Ashiraf also advocates for Renal Medullary Carcinoma, a rare type of Kidney Cancer that effects majorly sickle cell traits.

Ashiraf is a two-time nominee of WEGO Health Activist of the Year in 2013 and 2014. This year, he was honored the International Sickle Cell Advocate of the Year 2015 by SickleCell101.org to recognize his efforts into raising sickle cell awareness in his community.

Reproductive Health & Sickle Cell Disease

Image Source: Can Stock Photo

For many years, the life expectancy of people with sickle cell disease has improved. With improved healthcare, the now people with sickle cell can live longer into their adulthood. The transition from pediatric care to adult care has exposed warriors to a many number of challenges which the public healthcare was not prepared for.

For many years’ sickle cell, has been an infant disease, so little attention was given to managing the disease in adults. Those who now graduate from pediatric to adult healthcare face a management vacuum.

Historically medical treatment, programs, projects and policy formulation have rarely taken into account the reproductive health expectations and experiences of people with sickle cell disease.

Adult with sickle cell disease are a serious risk in a crisis that has been brewing for decades. They get sicker than other adults. They are victims of cultural-socio-economic stigma. They are reluctant to see reproductive health professionals and if they finally try to, they face barriers to information and care.

People with sickle cell disease’s reproductive health care is an essential component of building on complete and inclusive healthcare system and achieving optimal overall health. However there is an increasing crisis in the health and well being of people with SCD.

Information is power and whoever has the information has the power to make an informed decision. Limited reproductive health information for people living with sickle cell has made them vulnerable. Unlike other groups of people with chronic disease who receive appropriate reproductive information like HIV patients, sickle cell patients do not have the opportunity to receive the information they need.
Reproductive health information is not a “one shoe fits all” so each class of people must receive information that fits that group.
There are several reproductive health issues affecting people with SCD including

·       Menstruation

·       Sickle cell status disclosure

·       Pregnancy

·       Sex and freedom to parenting

·       Men with sickle cell disease

Menstruation

Girls with sickle cell disease always have delayed menstruation periods compared to other girls. If a reproductive health educator don’t pass on this information to these girls they will be affected as they may think that they are abnormal.

Many girls with sickle cell disease have a more than one year of delayed menses. Everybody in this world wants to move at the same pace as peers. Nobody wants to be the last person. The frustration and long waiting causes trauma and psychological torture. Just imagine the school emphasizing that every girl of your age should come with sanitary towels enough for the school term. You carry the sanitary towels and don’t use them because you have not started.

Although menses onset is delayed in female with sickle cell disease, menstrual bleeding patterns are normal. An unfortunate feature of menstrual bleeding in women with sickle cell disease is its association with an increased sickle cell related pain rates. Increased sickle cell related pain occurs at different stages of menstrual cycle.

In people with sickle cell the red blood cells have a life span of 10-20 days compared to those without sickle cell which last for 120 days in the body. The body has to struggle and manufacture blood. On top of these losses the monthly menses vampires also suck blood.

The mean monthly in some people brings pain. It is more common among people with sickle cell to prepare themselves for the pain to come. For a number of ladies I have interacted with when that period of the month approaches they have to either stock painkillers or get their stuff ready for hospitalization. It feels awkward to be their waiting for pain which you have no control over.

"I have to spend 5 days a month in crisis due to my periods" one of my friends told me. She has to struggle for 5 days a month in pain until when the periods ends. This translates into 60 days of pain annually. This discounts other crisis. For ladies with sickle cell disease monthly pain should not be an item on your menu. You can always overcome your pain by eating a balanced diet. Invest in using blood boosters even when the vampire sucks your blood your Hb does not drop. 

Pain is not virtue.

Sickle Cell Status Disclosure

The politics of the sickle cell gene and relationship is one of the major challenges in sickle cell. Almost every person who is battling sickle cell disease will tell you that they would not even want their enemy to experience the sickle cell pain. Every one would not want to bring to this world a child who will be in pain all their lives, the guilt that will haunt you for all your life.

The first step to prevent the birth of a child with sickle cell is knowing your genotype and that of your partner. You can only know when you disclose the status to your partner. Adult men and women with sickle cell are confronted with the challenge of communicating their status to partners and deciding with their partners what their plans will be in advance of pregnancy.

You don't need to have the conversation too late for the sake of openness in the relationship or too early to avoid presumption of long term commitment early in the relationship. You need to repeat this type of communication as partners change throughout the child bearing years. Once partners have communicated about their sickle cell disease or trait status, the first decision maybe whether to have a baby a decision that may be influenced by the social network.

If a man or woman with sickle cell disease decide to have a baby and want to be certain that the baby does not have sickle cell disease a partner must have neither sickle cell disease or sickle cell trait or be aware of the advances in assisted reproductive technology and prenatal testing that are available to support this decision. The woman also need to be fully aware of the potential physical consequences to herself during pregnancy.

Sickle Cell and Pregnancy

Women look for happiness in having children and the process of getting children is through pregnancy. Even men are always happy to be fathers, being a husband alone is not enough to satisfy one’s soul.

For women with sickle cell getting pregnant is not a walk in the park. To many parents who have adults daughters with sickle cell they discourage them from getting pregnant for fear of dying while holding that pregnancy. Many women with sickle cell become pregnant without first getting the information on the complications of pregnancy. This is because their parents and friends always discourage them, Who would not like to have the joy of having a baby? I think no one.

image  Source:
http://www.cardiffandvaleuhb.wales.nhs.uk/sickle-cell-info-for-health-professionals

The reproductive freedom of adult women with SCD might be restricted because of their illness. A number of women with sickle cell have been forced to terminate their pregnancies not because it was too risky but only because they have sickle cell disease.

The closure of opportunities for people with sickle cell has forced them to get pregnant with little forethought or opportunity for well-informed reproductive health decisions.

Pregnant women with SCD are at risk for pregnancy-related complications such as bleeding, infection, hypertension, and preterm labor, and more sickle cell manifestations during pregnancy, such as worsening anemia and more frequent pain episodes.

Because women with SCD are at risk for pregnancy-related complications as well as the potential teratogenic effects of Hydroxyurea, contraception counseling is paramount to decreasing unplanned pregnancies.

It is highly advisable that before any woman with SCD get pregnant she needs to first consult specialist and weigh in the problems vs benefits of becoming pregnant.

During the period of pregnancy you should visit both your antenatal and sickle cell clinic for proper management.

Sex and Freedom To Parenting

Getting a partner is what every person would like. The first question most partners ask is ARE YOU ABLE TO TAKE PART IN SEXUAL ACTIVITY? Those with sickle cell disease have been asked this question several times. At times the answer is difficult but the answer is yes. Sickle cell disease affects the red blood cells but doesn’t affect the sexual ability of a person. Forcing people to become parents has been condemned but denying people with sickle cell their parenting right has been a silent issue. Choosing to have a child is an unquestioned right, yet society insists that people with sickle cell disease justify and defend their decision.

There are a number of misconceptions about people with sickle cell disease. Misconception include that they are not sexually active, asexual, uninterested in sex, unable to take part in sexual activity. Many reproductive health care providers are unprepared to discuss issues of fertility, conception and pregnancy with people living with sickle cell disease. For people with sickle cell disease their desire for freedom to have sex and bear a child is no different than other people. Curtailing of their freedom is a cause of crises to many.

Always people with sickle cell disease have delayed puberty but this does not mean that they don’t finally get to full puberty. We all have the same feelings about sex whether you have sickle cell or not. Lack of information about sex amongst people with sickle cell disease creates a fear for getting involved in sex. Those who mange to start, do it with a lot of uncertainties. They do not know how to do it, the dos and don’ts among other things.

For decades discussing sex and sickle cell disease has been a no go area. Sex a vigorous activity which needs to be engaged in with caution. Sex is the same whether you have sickle cell or not. The only difference is that we have to take more precautions than others do.

You have to take water before, during sex breaks and immediately after. You should also be cautious about the sex style you choose. Sex styles that stresses the joints are not good for your health. An understanding partner is a bonus because this partner should be understanding enough and supportive when you reach your limit.

Men With Sickle Cell Disease

Always men are silent on matters concerning their health. There a few men who stand out to speak about health issues they face every day. Even in advocacy the voice of men despite having "bigger" voices are silent.

Ellen Weinstein

Reproductive health information gap has not been only for women but also men are affected too. It’s more common to boys when they get to their puberty age to have their voices deepen. It’s a feature that many use as a tool to show that they are now grown up and assert their relevancy in the society.

The deepening of voice in most male with sickle cell delay. Most male with sickle cell disease have delayed growth which affects their self-esteem."YOU CANNOT SIT ON THE TABLE OF MEN WHEN YOU ARE STILL A CHILD" that's the statement they always hear from their peers. At this time age does not matter it’s the features you have that matter. Delay affects every aspect that concerns the sexual development including: enlargement of the scrotum, and testicles, lengthening of the penis, enlargement of seminal vesicles and prostate gland, growth of pubic hair, growth of hair on face and in the underarms.

Sickle cell does not only bring the physical pain but also the psychological pain. It is only that the effect of mental health on the lives of people with sickle cell disease. It’s surprising that even when the men’s voices finally deepen they remain silent about issues concerning them. Do you want women to speak on issues concerning you?

Conclusion

The desire for freedom to bear children is no different than those without sickle cell disease. There is a continuous need to have equal access to reproductive health services, including sexual health education and access to contraceptives.

Lack of access to reproductive health information can prove to be dangerous to people with sickle cell disease who can not receive adequate reproductive healthcare.

Children of people with sickle cell disease are sometimes seen as victims and their parents are scrutinized for their choices and their right to parent. They are labeled as unfit parents.