SICKLE CELL: WE SHOULD STOP LIVING IN DENIAL

Yesterday I was seated at my physician's clinic waiting to see him this time not for treatment but for a friendly chat. A lady came out of the treatment room in a lot of pain and came where i was seated with an old woman. Her body signaled that she wanted to sit there yet her mother was asking her to go and sit in the car as they waited for the prescription. I gave her space to sit but she was in too much pain. She still had the energy to greet us but the words were not clear.

She was having pain in the arms and neck. I did not ask her anything because she could not talk. But with the pain she was in and her ability to greet us I just thought that she a sickle cell warrior.

Minutes after her departure a nurse asked me whether I had seen her, I told her she was seated next to me. She told me the lady is also a sickle cell warrior and had her wedding lately and now a mother.

The same nurse narrated to me the story of her neighbor who has 15 years old boy sickler (first born). She gave birth to the second born and was free from sickle cell disease. The last born now is 7 years old and also a sickler.

The lady refused to accept that her other child has sickle cell disease. When this nurse asked hen she denied. The lady has trekked a number of hospitals repeating the same test and praying that her last born at least be carrier but all the signs the boy has are of a sickler. But all the test come out showing the child with sickle cell disease

It has taken her a number of years and several tests in different hospitals and laboratories to at least now accept that her child has sickle cell disease.

Many people are still living in denial. More awareness and sensitization about sickle cell disease is still needed. Each one should teach one.

A sickle cell free generation is possible and it begins with you.
#besickleaware

LAUNCH OF THE NATIONAL NEONATAL SICKLE CELL SCREENING

World Health Organization (WHO) estimates that over 250,000 babies are born with sickle cell disease (SCD) annually in Sub-Saharan Africa, and only 10% -50% of them survive beyond five years of age. Data describing the magnitude of the sickle cell problem are lacking in most African countries. The available data on the prevalance were mainly from older studies and small numbers of hospitalized patients. In Uganda, approximately 25,00 children are born with sickle cell disease every year, but unfortunately 70-80% die before their 5th birthday. There is no newborn screening program in the country, and children are often diagnosed late after development of a crisis. With lack of a screening program, diagnosis is usually made late and many children die before they are diagnosed.

In February 2014, the Ministry of Health working in collaboration with Cincinnati Children's Hospital based in USA, Makerere University and Sickle Cell Association of Uganda launched a sickle cell survey with the objective of establishing the prevalence and mapping out the entire country. The screening was conducted at Central Public Health Labaratories (CPHL). The survey ended on 31st March 2015. About 100,000 infants from all districts in the country were reached. Data analysis is now complete and the information generated from this survey has given us a clear picture of the prevalance of sickle cell trait and disease across all districts of Uganda. This information will enable the Ministry of Health with its partners, to develop interventions to combat and control the sickle cell burden in the country.

The Ministry of Health with its partners are planning to disseminate results of this survey and launch routine neonatal sickle cell screening in all high burden districts in Uganda. The function will be conducted on the 16th of April 2015 at Makerere University Freedom Square from 11:00 am to 4:00 pm. Besides the launch of the neonatal screening program, there will be free screening for whoever will wish to be tested at the launch site. 
  #April16   #besickleaware  

A SICKLER’S HORROR STORY: I WAS RAPED AND INFECTED WITH HIV

I am 23 years old lady. I am the first born of my mother and I have other two siblings a brother and a sister. I am also the only one in my family with sickle cell disease. My father has 5 children; all the other 4 are free from sickle cell.

My mother died of HIV/AIDS when I was in senior five and I dropped out of school due to lack of school fees. Later my aunt took me to Nserester Complex in Masaka for a vocational course. In the mid of the semester I got to learn that my siblings were getting spoilt. My sister had started dating men at a tender age and my brother was taking alcohol and abusing other drugs. I dropped out of Nserester to save my siblings.

I started to do odd jobs to raise money for their school fees. By then I was their mother and father. At one time I had to juggle two jobs at ago; one was to work at a supermarket from morning up to midnight the second was cleaning a health centre and I worked up to around 3am and go to bed. This made me get attracted to tramadol to manage fatigue. I became addicted to it. I used to take 10 tablets at ago. But now with the help of a friend I have reduced to 4 tablets a day.

At home we were not in good terms with my father and we decided to go and stay with our grandmother. When the Town Council administration evicted her from the house I decided to go and rent. By then my sister had finished her course in cosmetology and my brother had finished his vehicle mechanical apprenticeship course and both had started working. I stayed in the rented house for some months with my brother.

Later my dad called me home when I got a sickle cell crisis. I accepted to return home. He was also staying in the house alone.

When I came back home I met our former maid when I was still in senior at my grandmother’s place. During the period she worked about  she was a good maid at home and was my friend. She is 6 years older than me. Then she had returned from Nakasongola where she had gone after working and started a restaurant in Wakiso.

We used to communicate and we had no problem. She later got sick, I think she was bewitched. She was too sick and due to high medical bills all her capital got depleted and the restaurant closed.

I used to go and attend to her, she had no relatives around I did not want to leave her to die. When the situation deteriorated and I also could not go to her place everyday I asked my father to host her. Since we were two people at home; me and my dad he accepted.

I brought her home and treated her for two weeks and she got healed and back to her feet. When she went back to her home she found when the land lord had evicted her out of the house. She did not have any money left with her and her restaurant had closed. She was stranded and had nowhere to go. She stayed with us again as she was looking for another job.

She had a boyfriend who happened to be a boda boda (motorcycle) rider. On Thursday 27^th November 2014 she asked me to accompany her to go out with her boyfriend in a bar called Cado Pado. When we reached at the bar we found her boyfriend with another man. He introduced us to the man as his customer whom he rides when in hurry. I knew her boyfriend because he used to come home when I was around 12 years and everyone at one knew him, even my father calls to him son.

The man bought drinks for all of us. He then pulled his chair next to me. After sometimes he introduced himself as Ssalongo Hamad and told me he was 42 years. He asked me to be his girlfriend. I told him I was not going to love him. He was in the age bracket of my father. He laughed and kept quiet. I told the maid and her boyfriend that I was not comfortable with the man. I asked them to take me home.

The next day on Friday the maid’s boyfriend invited us to a pub called KK which is a few metres from home. There were musicians going to perform. We went to the pub and sat. The maid’s boyfriend bought me Red Bull because I don’t take alcohol. The same man we were with at night in Cado Pado came where we were seated, he found me taking my Red Bull and the can was halfway. He asked me whether I wanted more Red Bull I told him that it was ok. He bought for me more three cans. I took one more.

At the end of the show the maid had taken a lot of alcohol and could not even walk on her own. I held her and took her home. By the time we left the other man had left earlier.

On Saturday 29^th 2014 around 7pm I received a phone call from my maid’s boyfriend Vincent, he told me that he was calling Sophie’s (the maid) phone and it was off. I told him that she had hangover and even her phone battery was down. Vincent told me that he wanted to give Sophie money for plaiting her hair. He explained that he could not give her money the previous night because she was too drunk. He asked me whether I could help her pick the money. I accepted.

I asked him whether he was at his place. He told me he had slept at Ssalongo’s place the man we were with at night. Since I had known Vincent for long time I never suspected any sinister motive.

I asked him Ssalongo’s place and he told me to come to Nakabugo. He asked me to get a boda boda and he talk to him. I got one they talked on phone and even gave him the directions.

When we got to the house he came and paid the boda boda. I told him to give me the money and I go back with the same boda boda. He refused and told me that the money was in the house. He asked me to go with him and pick the money. He told me to enter. The house was big. It has about five bedrooms. We entered from the front door. Vincent closed the door and removed the keys. He told me to sit and watch TV as he went to pick the money. I heard the back door closed. I waited for about 5 minutes and he was not coming back. I called him. There was no response. I sat again and watched TV.

After about 15 minutes Ssalongo emerged out of the bedroom in a towel. I knelt and greeted him as an elder because he is my father’s age. I asked him where Vincent was and he told me he did not know. I told Ssalongo that he had invited me to pick money for his girlfriend but was not returning. He laughed and walked back to the bedroom.

He came back putting on a pair of shorts. I told him that if Vincent was not coming let me go. I tried calling his number but it was off. I told him that I did not have transport. Then he told me if I wanted money for transport he was going to give it to me. He went back to the bedroom.

Later he came back putting on a towel. I asked him for the money he had promised instead he came and sat next to me. He started touching me romantically. I told him I had not come to be touched. He stopped. I then told him that I had made it clear to him I was not going to love him. He authoritatively told me that I was going to love him. I stood up and walked straight to the door to open it. It was locked. He remained seated. I walked to the back door. It was also locked. I called Vincent and Sophie’s phones, both were off. He walked towards me I shouted for help but there was no response. He told that I was not going to eat his money and get away with it. I had never received any money from him. He was too determined.

He forced me to his bed pounced on me, overpowered, removed my clothes and forced me into sex. After the rape he opened the door and threw a 2000 Uganda Shilling note to me and he told me that is your transport. I picked the money because I did not have anything to do and been bruised. I got to the main road got boda boda and came back home.

Reaching home and I found Sophie washing her clothes. I asked her whether she had heard from Vincent and she told me he had just left and told her that he had left us with Ssalongo and never wanted to disturb us. I narrated to her what had happened and she requested me to forgive her.

In the evening I went to the pharmacy to buy some drugs. Before that rape I had spent about 3 years without having sex. I had been bruised.

I did not open up a case against him. I feared to get ashamed. I also never expected to get justice.

After the rape incidence I was badly affected physically and psychologically. I was traumatised. I reached an extent when I ran away from my father. When he came to the sitting room I could just run to my bedroom. I did not want to face any person even my sister. But for a man it was worse. Every time I saw a man the rape incident replayed in my head.

A week after I became weak. My father thought that I was sick and I was having a crisis and did not want to tell him. He gave me money to go to Mulago hospital.

My worry was that this man could have impregnated me. I bought the pregnancy test kit and I tested negative to the pregnancy. I could not sleep after that incidence.

The same condition continued I even started to get nausea. I went to the pharmacy bought Oral Rehydration Salt (ORS), multi vitamins, 3 bottles of cod liver oils, tramadol and multiviti. I took all the medicine for some days with a lot of fluids but there was no difference.

Since my father is HIV positive and stock a hundreds of Septrin I reached out to his septrin. I used to take 2 tablets a day. After 3 days my condition had improved and was no longer weak.

In January this year Sophie got another boyfriend who promised to marry her on condition that she tested for HIV. She first refused to go for the test. I later convinced her to test.

On 15^th January 2015 we went together at Meeting Point on Kasengejje Road in Wakiso for her HIV test. I had not gone to test. I just escorted her to motivate her and boast her confidence.

We sat and waited for the doctor. When he came at around 1pm they called us to come and test. I told them I did not come to test. Later I told them let me also test. I did not want to test because for the number of test I did the results were negative.

Sophie went in first, after her I entered the testing room. We waited for about 30 minutes for the results. She went in first to the counsellor’s room when the results came back. When she came out I entered to pick mine. The counsellor asked me when I last tested and I told him July 2013. I had taken long because I was not sexually active for about 3 years. He asked me what if the results were positive. I jokingly answered him that I start the drugs. I later told him that it would be worse for me because am already battling with sickle cell. Then he me told if they were negative I told him that I try to stay negative. After a short period of silence he told me I was HIV positive. I shivered. I did not cry at that time. I felt like someone had told me you are dying tomorrow. My ears closed, I could not hear anymore what ever he said. I did not know where to start from.

I recalled the condition my mother was in before she died. She had died miserably because we discovered that she was HIV positive when it was in advanced stage. My father is battling with AIDS.

I got flashbacks of my mother dying without fresh on her bones, ailing in pain, body full of rashes. I saw myself in a lonely room in a sickle cell crisis and AIDS.

After testing positive, the counsellor advised me to start on medication and taught me how to live positively. He told me to take the worries away and that I will live a healthy life.

He gave me two options where I could get the drugs; Meeting Point where I tested from or Wakiso Health Centre. I opted for Meeting Point because of their care. I was asked to come back the next day on Friday and be introduced on Septrin.

When we were leaving I told Sophie that I had tested positive, she also told me that she had also tested positive but for her she was not moved. She just told me “I have slept with many men. I expected that”.

I went home and cried. I saw my future ending and my dreams shattered. I told my younger sister. I was told that she fainted on learning that I was HIV positive. In the evening she came home with her husband and told me she never believed the results. We went to a private clinic and tested again. When the results came back I was positive and she and her husband were negative.

With the counselling and care I have received from Meeting Point I am now learning and getting to terms with the fact that I am HIV positive. Previously I used to wake up in the night and also had nightmares.

Right now I want everybody to understand that HIV/AIDS is real especially young girls. Previously I did not understand HIV as I know it today. However much my mother died of it when I was old enough but it had not sank into my head.

Am dedicating my life to see that no other person gets infected. Am also on a mission to motivate people living with sickle cell disease like me.

I still want to go back to school and study a course in Guidance and Counselling to counsel those living with sickle cell disease and HIV/AIDS.

As she narrated to me 

Sickle Cell Activists needs to understand the media

I was nominated in WEGO Health Activist Awards. The 4th Annual edition of the Awards which is organised by WEGO, a health organisation based in Boston USA. I was nominated in four categories out of the 14; Best in show Blog, Twitter, Facebook and Best Kept Secret; for using the online tools to carry out sickle cell awareness.

Using social media to spread the sickle cell gospel has gained momentum in the last couple of years. But in Uganda most people use the main stream media (radios, TVs, and newspapers).

Recently, I had a discussion with one of the leading health reporter. During our discussion, I asked her why the media does not prioritise sickle cell disease in their health news despite burden it has exerted on many Ugandans. The reporter told me that it is in their best interest to prioritise sickle cell but sickle cell activists and doctors dealing with sickle cell don’t understand how the media operates. 

In Uganda, according to the 1949 survey by Lehman and Rapper, 20% of the population then carried the sickle cell gene. Today 33,000 babies are born with the disease annually and 70-80% of them don’t make to five years of age. Three children under the age of five die every hour from sickle cell in Uganda.

The media play an essential role in the public perception of sickle cell disease. While the media often perpetuate unhelpful stereotypes of sickle cell, if properly harnessed, it may also be used to challenge prejudice, inform and initiate debate and so help to combat the stigma experienced by people with sickle cell disease and their caregivers. Sickle cell patients their treatments and those who provide them are all subject to overwhelmingly negative portrayals in the print and broadcast media.

In war, truth is said to be the first casualty. Something similar may be said for sickle cell disease. Dehumanisation, inaccuracy and sensationalism seem to be the media’s stock-in-trade. Media professionals make no apology for this, citing the provision of impartial, emotionally-neutral accounts as one of their least pressing concerns. They also reject the notion that they are responsible for the perpetuation of harmful stereotypes, claiming instead that they merely mirror the values and beliefs of our society.

From within the fraternity, the call to improve relationships with the media, or at least make better use of it, has remained muted. Many view the media and the few sickle cell warriors who work within it with suspicion and, possibly envy. It is seen as uncertain ground, where only the foolhardy or the talented dare to tread. What is certain, however, is that sickle cell will generate raw news material indefinitely. If sickle cell is to exert a humanising influence upon the journalistic processing of this material, it must develop a far greater understanding of the discourse of the media professions and incorporate this understanding into its practice.

For the media, the content of all accounts of sickle cell, even those with an explicit educational intent, are subsidiary to another question: is it interesting? Far more than medicine, media is a business. Its output is driven by an overriding need to gain and sustain attention. Information is a raw product that must be processed into a form to achieve this end.

Journalists do not confine themselves to a shift of emphasis. They may actively rearrange words, quotes, facts or even the chronological sequence of events, in order to create a meaning that was absent from the original event.

Media professionals are also aware of the importance of recency. Public interest is notoriously unpredictable and the short period during which an issue remains in the news defines a crucial time frame for the media.

Media workers regard a prompt response to an enquiry as essential and will return repeatedly to consult an ‘expert’, even if that expert’s reputation for promptness and fluency far exceeds his or her impartiality or knowledge. This accounts for much of the success now enjoyed by many HIV/AIDS and rights lobbying groups, all of which have devoted considerable effort to the development of a coherent media strategy.

Health correspondents have the largest mail box in the news office, filled with ever more ingenious attempts to win a journalist's precious interest. Brass doorknobs symbolising patient care, silk brassieres high-lighting breast cancer, countless ideas compete daily for the health journalist's attention.

Thereafter, the journalist must get the idea past the news desk. This process is poorly understood by sickle cell activists and doctors, who often have difficulty separating a `worthy ' story from a `newsworthy ' story. To a journalist, the latter is crucial. Their piece must stand out, with a striking headline, a powerful introduction and a good story. Credibility, accuracy and human relevance alone are insufficient to ensure passage.

The primary objective of any media house is to gain access to the population. A responsibility to educate and inform is only a secondary motive of the journalistic profession.
The media can act as a powerful tool with which to confront our own inertia. By avoiding a “them and us” situation with the media, and instead creating a working dialogue with media agents across the land. We can make a significant difference.

Why you should endorse me for WEGO Health Activism Awards

When I was diagnosed with sickle cell disease in 2002, I knew my life was going to end in few months. Two years I decided that sickle cell wasn’t going to take over my life and I would have to find a way to do something positive and constructive while spreading awareness of sickle cell disease.

Moving to Facebook, Twitter, blog and Google Plus has given me an opportunity to meet people from all over the world who are trying to spread awareness, an opportunity to share information with people currently living in places where information about sickle cell is not readily available.

Long before, speaking about sickle cell disease and its mother – sickle cell trait was a taboo in our society. It was a shameful act for someone to declare publically that he/she has sickle cell disease. 

When I joined the social media in 2010 it was difficult to see anyone share information about sickle cell on their Facebook wall/timeline or tweet about sickle cell in Uganda. When I started to advocate for people living with sickle cell it was sacrilegious but I knew my mission in life.

Handling the microphone for the silent majority and acting as a voice for the voiceless was my mission.

I realized that knowledge is power, so my mission to empower everyone to understand the art and science of helping people with sickle cell get better, and help them regain control and get back to life. That’s the invisible hand behind the birth of Sickle Cell Network Uganda.

I am an advocate of people living with sickle cell disease and those who have sickle cell trait but experience the pain which is worse than sickle cell pain. I share my inspirational story of courage and humour about my battle with sickle cell trait pain which is rare.

The wall of my world gradually closed in over the years as the trait ravaged my life. Living with any chronic incurable disease isn’t easy. I share with my audiences the inspirations and lessons I have learnt along the uneven path to better health.

We can learn valuable lessons from challenging life events and emerge stronger. It is time to allow those dealing with sickle cell disease and trait with pain, the freedom to come out and share openly with others. We don’t have to be embarrassed or ashamed because we have sickle cell disease or the trait.

I try to change lives. Sickle cell disease activism is my everyday routine which I wake up thinking about. My mission is helping people realize that they are not the only one that have sickle cell, so they should not suffer alone in silence. Only since then I have raised awareness to stamp out sickle cell stigma because I care.

I work tirelessly and around the clock to help people. I am an advocate and I have done this on my own. I have a passion to see no one being defined by sickle cell and no child being born with sickle cell disease.

It is estimated that over 7 million Ugandans carry the sickle cell gene yet majority are unaware of their risky condition.

I often wondered if I am crazy to think I can change the world but something deep inside me tells me that this is what I am supposed to do.

Thanks to all my amazing followers, my dedication is even better than I dreamed.

If you love my work please endorse for WEGO health Activism awards. Follow this link to endorse.

https://awards.wegohealth.com/nominees/789 

REVIEW: SULZNER SICKLE CELL ANAEMIA FOUNDATION

It’s not my usual way of work to discuss matters that pertains sickle cell advocacy organizations. But considering what has been going on in the sickle cell arena in Uganda for the last couple of months in a case where someone is accused of extorting money in the name of helping children living with this hard to live disease – sickle cell disease that does not exist. To guard against all this I have voluntarily offered to give my unsolicited review of the new organization - Sulzner Sickle Cell Anaemia Foundation (SSCAF) which launched its operation in Uganda on 23^rd December 2014 at National Theatre in Kampala. Sulzner plans to start its work in Uganda in 2016.

Sulzner Sickle Cell Anaemia Foundation was started by Sulzner Sylvia Amasse a Ugandan nutritionist living in Austria. It’s the 4^th organization to officially launch its operation in Uganda in 2014. I did not discuss the first three but because of the inconsistent information which is also directly copied, edited and pasted from other sources. On early morning of 28^th December 2014 Sulzner went on their Facebook page to attack other organizations labeling them inattentive and ingracious (ungracious).

Sulzner’s major aim is to build a sickle cell clinic in Uganda free to the public, the idea is good. But the unanswered question is where is that clinic going to be located? Where that idea has been a success the sickle cell centre was located next to a teaching hospital. In Nigeria where it seems to me that it’s where the idea was copied National Sickle Cell Centre (NSCC) is strategically located opposite the Lagos University Teaching Hospital, which was done to facilitate desirable and effective collaboration with tertiary care hospital and university research centre. A similar arrangement was done in Mulago Hospital where the Cancer Institute and Heart Institute are located inside hospital.

Sulzner plans to partner with Sickle Cell Association of Uganda (SAU) to build the clinic. SAU for long has had  plans to build a sickle cell centre at their headquarters in Namalere - Kawanda located about 8 miles from the major hospital. For SAU this is the first partnership to have the clinic built which is estimated to cost 2 billion Uganda Shillings. In 2011 around May a ‘donor’ promised to work with SAU and construct the centre for them. The donor asked them to mail the original documents of the organization including land title, Constitution, Memorandum and Articles of Association to an address in USA. Before they mailed the documents a Good Samaritan requested them to first verify the given address. When he Googled the address he found out that the owner of the place had shifted a couple of weeks back and the house was not occupied yet. Lucky enough they got to know who was behind this fraud and is also involved in sickle cell advocacy in Uganda.

On their Official Facebook page Sulzner claims to be working with a committee of advisors – The Sulzner Sickle Cell Aneamia Foundation Expert Advisory Committee (SSCAF). They go ahead to state this committee of 30 members who are experts spread across the geo-political zones in Uganda was set up to examine all matters related sickle cell anaemia.

They go on and state that the committee sat and made decisions and recommendations.  This committee does not exist and is not spread all over Uganda as it is claimed.

Second the founder and a skeletal team of people that is in Uganda does not understand sickle cell disease and to claim that this is the team of expert it’s wrong. I attended their Christmas party and what the founder was telling the audience was just mere information read from the internet. But the interview she gave us (journalists outside National Theatre) after people had spoken was different when she got a human face of sickle cell.

Sulzner also states on her Facebook page that its formation was preceded by the formation of sickle cell clubs in Austria and the Federation of sickle cell clubs in Uganda. First enlightenment this information was copied, edited and pasted from the website of Sickle Cell Foundation Nigeria so its not original information and idea.

Second we do not have sickle cell clubs. In Uganda we have sickle cell associations both national and community based organizations. So since we do not have clubs like in Nigeria we can’t have a federation of sickle cell clubs which don’t exist.

Sulzner did not have partnerships in Uganda until when she came to Uganda in December that’s when she got in touch with Sickle Cell Association of Uganda. All people who attended the Christmas party were invited by SAU and were members of SAU except the media and her staff.

Finally, but petty the location of the organization’s office. Sulzner’s offices are located on Nasser Road, Zebra House.

My review of Sulzner is not to discredit or undermine their work but since now fraud has shifted from HIV to sickle cell we should be cautious.

Once bitten, Twice shy.

For God and My Country

10 YEARS OF MY SICKLE CELL ACTIVISM

This years i celebrate 10 years of Sickle cell activism. I started sickle cell activism in 2004 when i had just turned 14 years. Though the first part of my 10 years was about fighting abuses and discrimination against me but it was the foundation to what i do now. You can not fight for other people's rights when you are under oppression. It was hard to start i did not have any reliable source of information. The first information piece of information about sickle cell i got it from a doctor, Dr. Mulokola who owned a Clinic called Allied Clinic at Elgin Road Masaka. Though he explained to when i was in pain but what i can remember are two statements; you have to take folic acid everyday and sickle cell has no cure. The second piece of information i got it from a newspaper article which was given to my mother by someone i did not know. This article was in The New Vision and gave the facts about SCD, what causes it, signs and symptoms, treatment and what to do to stay well. What i did was to get a pen and a piece of paper transcribed whatever was in article and got my own copy. I STILL HAVE THAT COPY AFTER 10 YEARS

Image of transcribed article in 2004

Its this little information that helped me to launch a lone struggle. The first person to test whether the information i had received was of any use was a girl in my class (S2 G) who shouted on top of her voice that i had sickle cell. Because i had sickle cell she wanted to tell everyone that a person with sickle cell disease is not supposed to speak when "normal" people speak. I went straight to her and and warned her against discriminating against me. I did not get anyone after that incidence using sickle cell to demean me. Though the battles with teachers started until my last day in Secondary school in 2008. I started writing about the injustices committed to people with sickle cell in 2007 though my work remained on paper and was never published.

In my first year at the University i joined a number of online sickle cell awareness platforms, People living with sickle cell disease created by Ade Dot a Ning group was my maiden group. I later joined more groups and pages like Sickle cell Soldier Network of the late Phyllis Zachary Thomas and Sickle Cell Warrior of Ola Tosin.

Later in 2010 i opened my first Facebook account for Sickle cell awareness; Sickle Sicklecell Drive Uganda. Also my first work was published by The Daily Monitor. Currently i write when there is a need. And i also write for African Sickle Cell News and World Report in Nigeria.

10 Years now i have a number of social media dedicated for sickle cell awareness, i have Facebook, Twitter, Blog. 

After 10 years of activism and 5 years of online activism i was nominated in Wego Health Activism Awards in 4 categories categories;

1. Best Kept Secret Award
2. Best in Show Twitter
3. Best in Show Facebook
4. Best in Show Blog

You can vote me following this link https://awards.wegohealth.com/nominees/789

Am also no longer a freelancing activist like one head of sickle cell organisation told when i declined an offer to work with her organization am now with Sickle Cell Network Uganda.

Using my 10 years experience in activism i decided to write a book which portrays a clear perspective of living with sickle cell disease in Uganda. The book is called Midnight Tears Dry and shall be out soon.

10 years has not been a smooth ride but there has been hurdles and at times bigger hurdles.

I cannot forget to give a special mention to my friend who helped me to be firm and continue with this activism, Patricia Akoth May her soul rest in peace.

I can sum-up my ten years as years of "PAIN, PURPOSE, PERSEVERANCE AND STRUGGLE"

I thank Allah for seeing me though. Alhamudulilah

Sickle cell Network Uganda Interview on NTV Morning@NTV 25th June 2014

Evelyn Mwesigwa and Ssebandeke Ashiraf of Sickle cell Network Uganda interviewed by Brian Mulondo of NTV at Morning@NTV on 25th June 2014 discussing sickle cell disease in Uganda

SICKLE CELL NETWORK UGANDA IN BAMUNANIKA

On Saturday 28th June 2014  Sicklecell Network Uganda had a meeting with parents of people living with sickle cell disease in Bamunanika Luwero District. We met 12 parents but there was horrific stories which i want to share with you. 
There was a gentle who said that he has a child with sickle cell disease but has lost four babies and at first he did not know what the cause of their death. Another lady has two children with sickle cell disease and when a girl of 25 years was introduced on Hydroxyurea she became unconscious and became mentally sick. She was weaned off hydroxyurea but she still has the effects.

Another horrific story an old who seemed to be in her sixties. She gave birth to two children and they died early. She did not know the cause of their deaths. She now has 3 children with sickle cell disease and the husband chased her claiming that she is the cause of sickle cell.

There is still a lot of ignorance. These people have a nearby clinic which treat people with sickle cell at Kasan Health Centre IV but it work for only one day a week on Tuesday. And in most cases they have to get treatment from Mulago Hospital.

Stories are heart-aching. People are still ignorant about sickle cell a lot needs to be done.

We call for your support to bring to an end this monster.Your support is welcome.
If you have any group of people you want us to sensitise in your community, school, church, mosque you can invite us.

Waswa the sickler

On 5th July 2014 I was in Mulago hospital acute ward to see my colleague who has a son admitted. I found a 13 year boy who was in a crisis he has sickle cell disease. But having sickle cell disease is not what I want to look at here. This boy was brought by another kid younger than him. Because the sickle cell clinic work only 5 days he was brought to Acute. He had been brought in morning but upto 9pm when I left hospital not his mother or dad had come to see their son. When asked why his parents had not come he said his mother is at home looking after her 3 years child whom she can't leave alone at home.
My friend Evelyn tried to talk to nurses to treat him. But one nurse told her that she can't treat him because he didn't have parents. But after some time they treated him. Another backbreaking statement the nurse made was that parents are tired of children with sickle cell. This is a statement made to a mother of a child with sickle cell who was writhing in pain.

These are every day stories which are happening.
A week before a father contacted us as Sicklecell Network and his son was admitted in Mulago Hospital. My colleague Evelyn went and talked to the mother. The mother is UPDF soldier. She found her heartbroken she was about to give up and had vowed to take her son and drop him at her mother's home to save her job in the army. After the discussion she agreed to take care of her baby and were discharged
A lot needs to be done. I shall keep you updated about what we can do for this innocent boy who never asked God to give him sickle cell

SICKLE CELL AWARENESS KYENGEZA CATHOLIC PARISH

On Sunday 28th September 2014 Sickle cell Network Uganda had sickle cell awareness campaign at St. Kizito Catholic Church Kyengeza. Kyengeza is located on Kampala – Mityana Road and is under Kiyinda – Mityana Catholic Diocese.

Father Lazarus Kiggundu cautioned the Christians against the scourge of sickle cell disease.
He also noted the worrying increase in the number of people with sickle cell. He also noted that many people are not taking their children to hospitals because of ignorance about the disease. Fr. Kiggundu cautioned the Christians against sickle cell and warned those who have been calling it witch craft to stop it immediately. He promised that he is going to lobby other church leaders in the diocese to prioritise the genotype results for all intending couples as it is done in HIV. He commended the good work done Sickle cell Network Uganda of taking sickle cell awareness campaigns to rural areas.

Ms Evelyn Mwesigwa ED Sickle cell Network Uganda

Church congregation

Ms Evelyn Mwesigwa of Sickle cell Network Uganda taught those who care for people living with sickle cell disease how to manage them. She advised everyone to test and know their genotype to save the next generation.
“If you have not yet married please go and test to ascertain whether you have the sickle cell gene or not” she cautioned
“If you carry the gene do not get a partner who has the gene. Go for some one who is free from sickle cell gene. We need to have a sickle cell free generation. No one wants to see their child in excruciating pain.’
Edward a 10 year old who had come with her mother gave testimony about the pain he goes through.
“When the cold weather sets in I get a lot of pain which is inscribable” he said in agony.
His mother complained about the higher costs of treating his son.
“I have to take him to Mulago which is expensive for. We ask government to open up a sickle cell clinic at Mityana Hospital to save us from the higher costs of going to Kampala”

Many people complained about the lack of testing centres and even those that exist charge outrageous fees.
“I took my grand daughter for an Hb Electrophersis test in a private lab in Mityana and they charged me 60,000 Uganda shillings” Mr. Mulondo said
We extend our gratitude to Father incharge of Kyengeza Parish Fr. Lazarus Kiggundu assisted by Fr. Mutyaba and Fr. Galiwango for organising this campaign and accommodating us.