2nd Annual Sickle Cell Run

2nd Annual PSU Sickle Cell Run today at Kati Kati grounds organized by Pharmaceutical Society of Uganda in partnership with Sickle Cell Association of Uganda

Men with sickle cell disease: Reproductive health and sickle cell Part 7

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.

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 characteristics you have that matter. Delay affects every aspect that concerns the sexual development including: enlargement of the scrotum, and testes, 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?

Freedom to parenting: Reproductive health and sickle cell Part 6

Getting a partner is what every person would like. In part 4 of my series reproductive health and sickle cell I encouraged people with sickle cell disease to disclose their status to their partners. I have received feedback from a number of my readers. It is difficult to disclose to a partner whom you do not know whether will accept you as you are or not.

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.

Sickle Cell Network Uganda launched sickle cell clinic at Mityana General Hospital.

Joan Naziwa is a resident of Jingo village in Mityana districts, when her son presented signs of sickle cell disease she was referred to Mulago hospital for proper diagnosis. When he was diagnosed with sickle cell the doctors advised her to open up a patient’s file at the Mulago sickle cell clinic. She was further advised to come back after 3 months for a review. It is now 3 years and Joan has never returned to Mulago for any review. “I cannot manage the transport to Mulago” she said. From her village in Jingo to Mulago it’s a distance of 80 kilometres.

Joan is not alone other parents from Mityana and other districts who can not afford transport resorted to seeking treatment from private clinics and Mityana hospital where they could not get the treatment they need due to lack of medical officers who understands the management of sickle cell disease.

Sickle Cell Network team and medical officers from the hospital after the launch of the sickle cell clinic

When Sickle Cell network Uganda learnt these difficulties in accessing services it partnered with Mityana General Hospital to start a sickle cell clinic. The sickle cell clinic which was launched and opened yesterday (5th September 2016) will offer all the services to sickle cell patients every Monday including new born screening to all babies born from the hospital.

Greater Mubende is one of the areas with many cases of sickle cell disease but patients have to travel to Kampala for treatment.

Barbra Najjuma 40 year old lady living with sickle cell disease

“I know over 40 families in Mityana with sickle cell patients and they have been struggling to get treatment. Am sure with this sickle cell clinic the healthcare of people with sickle cell will improve” Barbra Najjuma who is a 40 years sickle cell patient said. She is also Women Councilor of people with disability of Mityana District.

Parents consulting doctors at the sickle cell clinic

Mityana sickle cell clinic is the second clinic Sickle Cell Network Uganda has launched in a period of less than year. It comes after Atutur hospital sickle cell clinic which now has more than 700 registered patients serving the Teso Sub Region.

Sickle Cell Pregnancy: Reproductive health and sickle cell Part 5

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. The Uganda 2002 National Anaemia Policy advises all women to seek information from hospitals about the complications of pregnancies. But how many in Uganda do it? Policies and their implementation will be a topic for another day.

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.

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 HU, 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.

#redsmearmonth #sicklecellawarenessmonth

Sickle cell status disclosure: Reproductive health part 4

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.
#redsmearmonth #sicklecellawareness #SCAM2016

Vampire menses: Reproductive health and sickle cell part 3

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 crises.

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.
#redsmearmonth #sicklecellawareness #SCAM2016

Sickle cell and reproductive health part 2 (Menstruation)

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 has to receive information that fits that group. For example 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. You return home with your pads. If someone counselled these girls and they get to understand how their bodies are different from other bodies.
#redsmearmonth #SCAM2016 #sicklecellawareness #sickleptember

Sickle cell and reproductive health part 1

For the last 2 decades of sickle cell advocacy in Uganda the emphasis has been put on management of the disease to reduce on the number of children who die every year.

In that field there has been a tremendous success and now we have many adults with sickle cell who have survived. 
Because sickle cell was always referred to as an infant disease little emphasis has been put on adult care. The reproductive life and healthcare of people with sickle cell disease has not been included in most of the reproductive health programs.

Its more common to speak to different players in the reproductive health and if you mention sickle cell their scripted response will be "we don't handle sickle cell people in our reproductive health programs"

There is still limited information on the experiences of people with sickle cell. 

#redsmearmonth #SCAM2016 #sicklecellawareness