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.

PLEASE VOTE ME FOR WEGO HEALTH ACTIVISTS AWARD 2014

I have been nominated in this year's WEGO Health Activist Awards 2014 #HAAwards in honour of my work in sickle cell advocacy. I have been nominated in four Categories

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

To vote for me please visit this link and click on endorse below my photo
https://awards.wegohealth.com/nominees/789

About WEGO
WEGO Health is a Boston based kind of social network, built from the ground up for the community leaders, bloggers and tweeters who are actively involved in health online. WEGO Health is a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities.

About the Categories

Best in Show Facebook

Facebook is a community all its own. Over the past few years it has transformed from a place for a personal profile to a real hub for discourse, conversation, and community. Who has the best Facebook Group or Page of anyone you know? They have balanced the tricky interface of Facebook and turned it into an opportunity to reach more people in a medium people are used to. They foster an environment that people want to "Like" and have a ton of interaction there every day. The leader of the group may have other sites - but he or she really exemplifies why Facebook can be used for good.

Best in Show Twitter

It's not easy doing amazing things in only 140 characters - but there are some people who truly excel at it. Taking an involved, difficult to explain story, piece of research, or words of support and creating an easily digestible thought is difficult. There are Health Activists who have connected with others and raised awareness just by tweeting - let's celebrate those using Twitter for their advocacy with an award! Whether they've created their own Twitter chat or participate actively in others' chats - they are the model of Twitter for #health.

Best Kept SECRETS

The internet is a vast place, making it near impossible to find all of the amazing content that exists. But people often have the best recommendations – so which Health Activist would you recommend that everyone follow? Who is a hidden gem who creates great content and should have the spotlight shone on them? Who deserves double the readership because they are doing great things as an advocate? Help us uncover the best kept secret of the online health space!

Best in show Blog

Whose blog do you absolutely love? Their writing is exceptional, their "voice" admirable, and their writing is just really worth reading. You think anyone wondering why patients or caregivers would blog about health should read this Health Activist's blog - it will make the case crystal clear. They have great info, raise awareness, and do whatever they can to help their community by using their blog. They may be active on numerous social platforms - but the blog is their bread and butter - and they are a great model of how to be a blogger.

Hydroxyurea is not a cure for sickle cell disease

Recently, a Ugandan daily newspaper carried a headline that a cure for sickle cell disease had been found.

This gave a lot of hope to many people who are suffering from, and those who have children with the disease. I personally received a number of phone calls and emails; my Facebook wall was filled with messages informing me of a sickle cell medical breakthrough, while others were congratulating me.

My friend, a mother to a son with sickle cell disease, also got numerous calls. Her friends and relatives were asking her to take Isiah to Mulago to be cured of the disease. The media report was in reference to a clinical trial for Hydroxyurea, a cancer drug that is also used to treat sickle cell disease in USA and Europe.

The trial is expected to start in Mulago next month, with 200 patients between 12 months and 47 months taking part. To many, it seemed as if the drug was new in Uganda, and it was going to eliminate sickle cell. Hydroxyurea is not a cure and has been in Uganda for some time. My first interaction with it was in 2011, when a doctor prescribed it. It was difficult to get it in pharmacies, but these days it’s common everywhere.

Hydroxyurea was first synthesised in 1869 in Germany, by Dresler and Stein. It started as an anti-cancer drug. Today, it has gained wide acceptance among haematologists as the number one medication for sickle cell disorder. This drug works by kick-starting, within the bone marrow, the production of potent blood cells that all babies are born with, the foetal haemoglobin (or HbF).

By the time a baby reaches the age of six months, HbF has been all but depleted and replaced with adult haemoglobin (HbA). This is why, in most cases, prior to the first six months of life, babies with sickle cell disease rarely exhibit symptoms of the disorder. HbF suppresses sickling.

Researchers credit Hydroxyurea for the improved life expectancy and the quality of life of people with sickle cell disease. For example, in the United States, the average life expectancy was 14 years in 1973, but it is now topping 50s. The US Food and Drug Authority approved Hydroxyurea for use by adults with sickle cell in 1998. And for the past couple of years, evidence has emerged, confirming its effectiveness in babies and children.

But with its effectiveness and efficacy in Europe and the US, it has not been studied in Uganda or any other malaria-endemic country, not even Nigeria where it has been used for a longer time. I hope this clinical trial is going to help us discover the good and bad of the drug in sub-Saharan Africa. With evidence from a number of people I have interacted with, the drug has had both positive and negative effects.

In June this year, on one of Sickle Cell Network Uganda’s community awareness outreaches in Bamunanika in Luweero, we met a 23-year-old woman who became paralysed after taking Hydroxyurea. She stopped talking and became mentally ill. She had only started to recover when her parents stopped giving her Hydroxyurea. But even then, her talking was uncoordinated.

So, despite its applicability, Hydroxyurea does not work for everyone. David Nathan of Dana Farber Cancer Institute, USA, says that Hydroxyurea works in only 50 per cent of patients. Similarly, for obscure reasons, Hydroxyurea does not address every sickle cell complication. In the same vein, although higher HbF levels are associated with less frequent acute pain episodes and reduced disease severity, they seem to have a weak impact on priapism, stroke, pulmonary hypertension and blood vessel complications.

Professor Graham Serjeant, a sickle cell specialist, argues that although many doctors say Hydroxyurea has changed the lives of many patients, some do not respond at all. He says there are toxic effects and “we don’t know about long term dangers”.

Therefore, we should take note that Hydroxyurea is not a cure drug for sickle cell disease. I urge those who are carrying out the trial to provide full information, including the benefits and likely side effects, to help participants make informed decisions. It should also be important to follow up on those people who have used Hydroxyurea before

Sickle cell disease: The bubonic scourge of our time

By Ssebandeke Ashiraf

On 19^th June the world commemorates World Sickle Cell Day.

Over 200,000 babies are born each year with sickle cell disease in the whole world with Uganda contributing about 33,000 a 17% of the global annual births. About 80% of these babies born in Uganda do not live to celebrate their 5^th birthday.

20% Ugandans carry the sickle cell gene, which account for 7.5 million of 37.8 million population (United Nations Social and Economic Affairs Division 2013).  

According to UNICEF 141,000 children below the age of 5 years die annually in Uganda and 16.3% have sickle cell disease. This means 22,983 children die of sickle cell disease, 63 children with sickle cell die every day and 3 children are lost every hour that passes.

‘The bubonic scourge of our time’. ‘The worst health calamity in human history’. These are ominous words and phrases that can describe sickle cell disease.

The literature on sickle cell disease has been growing, but not the awareness about sickle cell, judging from vast ignorance that persists about the cause of sickle cell disease which threatens the survival of humanity.

The spread of sickle cell all over the world is rooted in modern man’s ignorance. Because the modern man has decided that folly is better than wisdom, sickle cell continues to take its heavy toll on humanity.

The spread of sickle cell disease in the modern world is indicative of ignorance. There is always a direct relationship between tribe and the level of the spread of sickle gene prevalence rate in Uganda. The available data on the prevalence of sickle cell trait (SCT) and annually estimated number of sickle cell disease cases in Uganda is based on the past survey by Lehman and Rapper in 1949. The prevalence of SCT varied among Ugandan tribes, with the Karimojong, Bakiga, Banyakole and Bahima recording the lowest frequency of 1-5%, Baganda, Iteso, Acholi and Banyoro recording 16-20%,  Basoga, Bagisu and Lugbara recording 20-28% and Bamba recording the highest frequency of 45% which is believed to be the highest in the whole world.

 In Uganda, sickle cell anemia remains the most frequent and traumatizing genetic disease which continues to devastate the families of sickle cell patients both mentally and economically. Increasingly sophisticated treatments have cut the sickle cell death rate in industrialized countries but in Sub Saharan Africa the epidemic is gathering momentum.

In most countries in Africa leaders are not worried about the costs both economic and emotion this disease causes. I should say to those who wield the power to change the current situation “If you do not work with those who are suffering today to address the problem of sickle cell you will have to deal with them later when they will get more dangerous and more expensive.

Many people think that sickle cell disease is a health issue. You are wrong. Sickle cell can no longer be confined to the health or social sector portfolio. Sickle cell is turning back the clock on development. To be effective prevention measures must be paired with investments that will create jobs, invigorate the educational system and pull the poor out of the ‘here now’. People who are trapped in poverty aren’t going to do much about health care. If everything else in this country is falling apart to pieces, it is not going to have much effect.

For every action, there is a reaction, and sometimes the reactions plague the ‘innocent bystanders’ – the thousands of children who are born with sickle cell disease, innocent children who will not live long because their parents did not worry about the outcomes of their actions.

The Holy books (Quran and Bible) teach us that many human communities were destroyed because the people were self indulgent to the point of self destruction. These communities failed to heed the advice of God’s prophets and the dictates of ‘inner prophets’ (i.e the human reason).

God is compassionate and merciful, but God’s laws are impersonal and universal, hardly making any exception. When people play with fire they get burned. Those who court danger will reap the resultant calamities.

Today Sub Saharan Africa unfortunately has the largest number people with sickle cell disease with Nigeria having over four million people and about 40 million people carrying the gene.

What should the Third World do to stem the tide of sickle cell? The spiritual, political and business leaders must come together to find out how they can control this crisis as no part of the world can claim to be immune to this threat.

By creating jobs, by infusing the spirit of hope in the poor, by properly using the educational system, the mass media and the pulpits, the government, the private sector as well as religious leaders can bring about sufficient awareness about this deadly disease.

Knowledge is power, and the poor in Africa have become the worst victim of this epidemic, because just like material wealth, knowledge and awareness have not been evenly distributed in the African continent.

The author is the Country Representative

African Sickle cell News and World Report – Nigeria

Email: askamulale@gmail.com  

Twitter: @UgandaWarrior        

Mob: 0779 210 960

Am on mission to be a good writer

Am on a mission to be a good writer. Am happy people are giving me tips. This is interesting. Am just praying to have a good health so that i complete my book and have it published before the end of this year. I just say thank you to the great people who have helped. You people you are great, you have inspired me;

1. Matovu-Mutesasira Twaha who gave me the reading materials and i started reading at a tender age when children of my age could not. I remember i used to read newspapers you sent to us in the village, The Crusader, Shariat, The Weekly Message i enjoyed the great columnist Ishaq Kintu Nganda with Nganda's Missive and of course The Monitor currently Daily Monitor i was a great fun of David Ouma Balikowa and The Ear to the Ground (Teeka okutu ku taka owulire ebiduduma) man Charles Onyango-Obbo.

2. Ibrahim Nganda Ssemujju who introduced me to writing. I remember he told me to report stories and i told me him and i do not know how to write. He straight away told me go and write. I started but my first story is not a "story" and when i sent it to him he did not not comment. But on my second story that's where my turning point in writing was i still remember his comment "Your story is good but the photos are not good". Thats when i knew that i could write.

3.Patricia Akoth (RIP), Kakaire Ayub Kirunda, Sentamu Edward Nakanyike Ann, Ruth Nankanja, who encouraged me to continue writing after my first article published by Sunday Monitor, 19 June 2011.

4 Wasajja Mahad who keeps on encouraging me to write.

5. The people i worked with at CIL - IPC Secretariat who gave me space to identify myself Dr. Frank Nabwiso, Raymond Lweterezo Robert Italo,Omar Kalinge-nnyago and Arinaitwe Scovia.

6. Melissa Kyeyune of KHAMEL iNK who introduced me to the art of editing and proof reading books. Whenever i see the books i worked on featuring on Amazon i just say i can also do it they have nothing that i do not have.

Lastly my parents.

You have really made me a person who write an article and it has an impact with full of sense.

Am proud because i did not go to any journalism class but i write better than those who went to journalism classes.

Am grateful

Alhamudillah

http://chimpreports.com/index.php/people/health/17638-how-new-born-screening-prevents-sickle-cell-disease.html

BUSOGA UNIVERSITY: Kenyans mine 'Gold' as Basoga harvest sugar canes.

BUSOGA UNIVERSITY:  Kenyans mine 'Gold' as Basoga harvest sugar canes.

By Ssebandeke Ashiraf

I spent the whole of last weekend in Busoga. On Saturday I was at Busoga University in Iganga a Christian founded institution. On my way to Iganga I was looking at a number of development initiatives. Few activities could be spotted a number of them on the roadside were boda bodas, hanged clothes for sale mostly second hand. I saw a number of Lorries filled more than to capacity ferrying sugarcanes. At Bulanga I saw cassava spread on the road – pedestrian walkway to dry on the major highway which transports most of Uganda’s imports and exports.

In the afternoon I attended the launch of Kagoma Youth Leaders Forum at Kagoma county headquarters organized by Kagoma Constituency Youth Leaders Association. The youth had a good theme for the launch “Youth in leadership for developmental initiatives”. The youth leaders invited all categories of people to offer them guidance from politicians to academicians.

I saw youths who were zealous about causing development in their area, if it there intention is not to ‘con’ politicians Kagoma county shall be a model area in a few years to come.

One of the leaders told me that 60% of people in Busoga earn their income from sugarcane growing. It’s little wonder that the education sector in Busoga is on a steady decline and the poor performance in recently released primary leaving exam results was blamed on children who spend a lot of study time in sugarcane plantations.

Busoga region has for long been known for its undisputable contribution to education with a number of prominent schools like Busoga College Mwiri, Iganga S.S the second Anglican girls’ school after Gayaza High School. It’s not surprising that the Uganda Motto “For God and My Country” was derived from Mwiri’s motto “Kulwa Katonda N’egwanga lyaffe” (For God and Our Country).

It’s also from Busoga where a lot of first women in their fields are from, the first woman vice president in Africa Hon. Specioza Kazibwe, the first woman lawyer to open up a law chamber and first Uganda female speaker of Parliement Hon. Rebecca Kadaga among others.

This may be the reason why Busoga dominated the country for many decades conforming to the saying “Educate a woman, Educate a Nation”.

As other regions are still hit by this social media syndrome of Tusaba gavumenti etuyambe (We ask government to intervene) appealing to government to construct universities in their regions, 15 years back in 1999 Busoga region lead by the Diocese of Busoga established Busoga University. The University is located on the famous education hub of CMS village 35 kilometers from the former industrial city of Jinja.

Being located in one of the most populated areas in Busoga and Uganda one would think that it would have almost 80% of students from Busoga and neighboring regions.

If you walk around the campus you realize that almost Kiswahili and Lusoga have the same number of speakers.

The university main campus in Iganga has many foreigners from Kenya, South Sudan, Somalia. The university is one of the three universities headquartered in Busoga with Fairland and Nsaka Universities in Jinja.

The last time I was at Busoga university in April 2013 there was swearing ceremony of the current Guild leaders, the Guild President is a Kenyan and Kenyans have a lion share in the Guild Cabinet.

I do not think that these Kenyans leaders can push for reforms on behalf of Busoga, it really can not happen.

Leaders in Busoga should fight to ‘Busoganise’ the University which is falling in the hands of Kenyans and other foreigners. A region that has dominated education for many years should not waste the golden opportunity. One of the unique things about education in Busoga, its where in Uganda you can find a public library in a village at Igombe in Buwenge sub county.

On Saturday 15^th February, Saturday Vision ran a story titled ‘Nabwiso new Busoga varsity vice chancellor”.  

Dr. Frank Nabwiso is taking on from Prof. Christopher Bakwesegha and he becomes the 2^nd vice chancellor in 15 years. The newspaper quoted him saying “Why should we have many Kenyans, Somalis, Sudanese enrolling at the university while our own are not?”

I think his initiative of attracting more local students to the university should be welcomed with open hands by all.

All leaders in Busoga region, political, religion and opinion should come together and identify the challenges facing the education sector, rank them and find best possible solutions to them.

One academician from Busoga told me that he was invited as chief guest by one of small schools in Jinja when they were celebrating their 2013 PLE performance. They narrated to him how ‘big’ people in Busoga have neglected them and the only person who helped them was the former vice president Hon. Specioza who donated to them 780,000 shillings in 1996 to roof their building which has now dilapidated.

He asked them whether they can not arise bags of cement, bricks, sand, nails. They answered him that they can mobilize the resources by themselves. So he advised them to stop being lazy and mobilize resources to construct their own school.

Leaders in Busoga should encourage their people to embrace their own and start mining ‘gold’ instead of concentrating of sugar cane harvest. 

MY INTERVIEW ON NTV UGANDA

You want to know how i live in another man's shadow or there is anything you want to know about my life? Did you know that even #sicklecell carriers can get #pain? All your questions are going to be answered catch me this Sunday 9th February 2014 at 5pm as am hosted by Zuena Kirema in an Exclusive interview on Lifestories only on NTV #Uganda .

Parents: Sex education to your children is vital 20th January 2014

Parents: Sex education to your children is vital

The schooling children are in the longest holiday of the year. It is assumed that parents are having discussions with them on almost every topic of their lives. But it is not the case; very few children are receiving attention from their “working” parents and most children, irrespective of their age from a baby class child to a high school graduate watch movies and soaps from sunrise to sunset.

I found two young children watching a Western (Hollywood) movie and a scene about sex was going to happen next, they both covered their faces. These two kids knew that the next action was going to be about sex.  When I asked them how they knew they could not give me an answer.

I was so inquisitive to know whether they have received any kind of sex education. Their answer was no, they neither received education from parents nor teachers.

According to a report, “Protecting the next generation in Uganda: New Evidence on Adolescent Sexual and Reproductive Health Needs”, published by Guttmacher Institute in 2008, only 33.8% of  girls and 22% of  boys aged  between 12 and 14 have received sex education in school. At home, 71% of girls and 64% of boys had never talked to parents about sex related matters.

Sex education is a topic many parents would prefer to avoid. And if you have a young child, you might think you are off the hook at least for a while. But that is not necessarily true. Sex education can begin any time.

Few young people receive adequate preparation for their sexual lives. This leaves them potentially vulnerable to coercion, abuse and exploitation, unintended pregnancy and sexually transmitted diseases and infection including HIV.

Many young people approach adulthood faced with conflicting and confusing messages about sexuality and gender. This is often exacerbated by embarrassment, silence and disapproval of open discussion of sexual matters by adult including parents and teachers at the very time when it is most needed.

Each year teens in Uganda experience as many pregnancies (25% of the adolescent girls become pregnant before the age of 19) and the youth experiences sexually transmitted infections. By the age of 18 the highest percentage of male and female has at least initiated sex.

Comprehensive sex education is effective at assisting young people to make healthy decisions and to adopt healthy sexual behaviours. No abstinence only until marriage programme has shown to help teens delay sex. Yet the government and religious institutions have spent a lot supporting abstinence only until marriage.

Although the Uganda government ignores that adolescents have a fundamental human right to accurate and comprehensive sexual health information, evidence has shown that comprehensive sex education that is age – appropriate, gender – sensitive and life skills based, can provide young people with the knowledge skills and efficacy to make informed decisions about their sexuality and lifestyle.

When young people are equipped with accurate and relevant information they will have developed skills in decision making, negotiation, communication and critical thinking and have access to counselling.

When your school age child inquires about sex, ask what he or she already knows. Correct any misconceptions and then offer enough details to answer the specific questions.  

Do not use nickname for your child’s sexual anatomy which may send the signal that these body parts should not be discussed.

If you do not teach your child about sex they will learn the hard way. Today access to information is easy, children can learn from televisions, movies and internet.

Sex is a staple of news, entertainment and advertising. It is hard to avoid this ever present topic. But when parents and teens need to talk, it is not always so easy. If you wait for perfect moment you might miss the best opportunities. Think of sex education as an ongoing conversation.

The writer is the Country Representative of the African Sickle cell News and World Report Nigeria

SICKLE CELL ADVOCACY: NOW OR NEVER

SICKLE CELL ADVOCACY: NOW OR NEVER

I think i have to sit again and write my book again FROM NOON TO NOON: LIFE AND STRUGGLE WITH #SICKLECELL hit a snag after the demise of my co-author. I need to get a a new storyline. When i write these articles about #sicklecell i think they cannot be kept for long. Am going to write a memoir book on life with #sicklecell and the daily management in #Uganda. Sickle cell activism is one of the hardest things in Uganda its more difficult than opposing the government in Uganda. You get in a situation where the people you want to see enjoy their rights in everyday life, in hospitals put stickers with words "DO NOT DISTURB" they think they are supposed to be treated as "abnormal". Most people with sickle cell look at themselves as inferior. As activists we are faced with two hurdles:
1. To change the mindset of people who live with sickle cell to think that they are normal, have rights and do not have to to look for sympathy but empathy
2. To change the peoples' thinking and understand that to live with sickle cell is not a death sentence and those people can live a productive life. That people with sickle cell need to be empathised with not sympathised.

I cannot forget what Philly Bongole Lutaaya said in 1989 when he was declaring that he was HIV positive.
"Stigma is caused by ignorance. People are so afraid and it is natural. Do not blame anyone who keeps away from you, just educate them to love and care for the sick"

I have realised that with my blog, (MY REAR WINDOW: THE RIGHT PERSPECTIVE.www.ashirafworld.blogspot.com), the Facebook account i have managed for yearsSicklecell Drive Uganda, and the numerous article i have been writing may not be enough to bring out the right perspective of sickle cell in Uganda.

So before the end of this year i have to see that my book is ready for publication or published inshallah and the new platform for advocacy; that's the new organisation Sicklecell Network Uganda should start changing peoples lives.
Its my responsibility, its your responsibility its Our responsibility.