MY BATTLE WITH DEPRESSION

2013 started in high gear with many expectations. I graduated with a Bachelor’s Degree and a few months later I got my first job before completing my responsibility as Google Students’ Ambassador. I was ready and ambitious to achieve more.

But before I started to see money on my account, things turned upside down. I started getting sick more often with pains I could not describe well. At first, I thought it was the usual pain that had presented itself differently. The time my doctor referred me to another doctor is when I realized that I had started on a journey to a far land. She had been my doctor for 3 years and understood even when I faked that I was ok when actually I wasn’t. Her referral scared me but I had to go by her advice.

I picked my referral letter and headed to my physician where I already had my file. He requested we do an ultrasound scan. It was my first time to go for it and was agitated by all the instructions, dos and don’ts before the scan. The diagnosis was appendicitis and my appendix had to be removed. At this time my friend Patricia whom we had been in and out of the hospital at different times was also scheduled for an operation.

My operation was successful, unfortunately, my friend Patricia Akoth never made it. As I dealt with her demise including burial, post-surgery complications surfaced my side. This seemed as though I was next. After burial things were tough for me. I used to sit at my work station and cry the whole day. Crying went on and on as the pain intensified. The pain was more often and painkillers provided no relief. I was giving up on life. My doctor was doing whatever was in her means to see that I get better but the condition was just worsening. I couldn’t get rid of these hours, days, and weeks of what felt like sinking into a big dark hole that I couldn’t climb out of. I would dose off at work despite sleeping long hours at night. I was always fatigued and waking up in the morning was painful.

At this time, we were preparing to start Sickle Cell Network Uganda. My contribution during these meetings was little because of pain. I would just sit, not knowing what to do next. I wanted to give up on this project but 3 things were barriers to me;

1) I was the one who had created the team and chickening out was treasonous

2) I had promised the late Patricia that I would never give up on sickle cell advocacy and was now doing this for her.

3) My doctor used to encourage me to go on.

I found it too difficult to speak to anyone, even my family about how I was feeling. I was too scared they wouldn’t understand.

One evening after work I was chatting with my doctor on WhatsApp and as usual, I complained about the pain. She sent a prescription and asked me to go to a pharmacy and buy the drugs. Having been a regular client at our nearby pharmacy, I rushed and bought the drugs as prescribed. I knew this was another round of popping more pills as I had done before.

Waking up the next morning I was a little better. I went to see her the next day and she diagnosed me with depression. It hit me hard. What do I do? I couldn’t find any answers. I collected my pieces and got back on my feet knowing I was not alone. It has happened to other people too. With a decision that life must improve, my recovery journey started. My doctor helped me through this process and used to make sure I was fine all the time. She gave me all the attention until when she made sure that 

I had totally recovered from depression.

Depression did not stop my sickle cell advocacy work. I always looked a happy person and gave motivating and encouraging talk to people with sickle cell and their parents but deep inside depression was eating me up. The confidence and self-belief to keep on trying made me win the battle against depression.

This year am celebrating 15 years of sickle cell advocacy. You can support my work by buying my celebration t-shirt at 30,000 Uganda Shillings. The proceeds will help to support Feed A Warrior program for children living with sickle cell disease in rural areas. 

To preorder the t-shirt you can inbox me with your preferred size or contact me on 0779210960 (WhatsApp), 0701042239 or Culton Scovia on 0701039001.

#15yrsofSCDadvocacy #ASKsicklecell #BePart

Ashiraf’s 15 years of sickle cell advocacy

This year 2019, I am celebrating 15 years of sickle cell advocacy. This journey started in 2004 at 14 years while a student in senior two. Despite hundreds of trials, I’ve never stopped and not about to. In commemoration of this great milestone, I have created a t-shirt campaign at 30,000 Uganda Shillings.

The proceeds from these t-shirts will help children living with sickle cell disease through the Feed A Warrior Program. Feed A Warrior is a program of Action Against Sickle Cell Disease that comprehensively improve the nutritional status of rural children living with sickle cell disease through promotion of simple gardens, nutrition education, counseling, and food demonstration. Currently, the program is benefiting 15 families with children living with sickle cell disease in Busia District, Eastern Uganda. Vegetable gardens set up help to provide an all year round supply of folate-rich vegetables. Families have a ready supply that helps in boosting immunity and fighting anemia among children with sickle cell disease.

Funds will help to buy nutrition assessment equipment, seeds, pesticides, fertilizers and other farm inputs plus organizing training.

To preorder the t-shirt you can inbox me with your preferred size or contact me on 0779210960 (WhatsApp), 0701042239 or Culton Scovia on 0701039001.

#15yrsofSCDadvocacy #ASKsicklecell #BePart

In Loving Memory of Patricia Akoth

Today is 5 years since Patricia Akoth got wings and flew to the world beyond.

Today we remember the laughter and joy you brought into our lives everyday. We think of you always and love you so. I know you would want us all laughing and smiling today. So we think of you and remember all the laughter and joy we shared together.

Another year has come and you are still so far away. You're always in my heart each day and everyday. I still can not believe you are gone. I hurt deep inside. I cry a tear day after day wishing you were by my side.

I never got say goodbye. I wish I had the chance to say, I love you, I miss you each and everyday.

I wake up in the morning and look up to the sky. I wonder why He took you before I said goodbye. I look up to the stars at night and know you're looking down. I would like to think you're proud of me.

You left me in this sickle cell struggle alone. It became harder and harder. But every time I think of giving up I remember your words.

My sister your little brother still remember you. I still keep your dream alive "No child should be born with sickle cell disease again" that's what you always told me and I wake up everyday to realise that. Until this sickle cell monster come for me. Rest in peace

Mourning and "morning" of Quintine Christine

We met again after many days of chatting. She had just finished her degree in Business Statistics from Makerere University Business School and awaiting results. Even on the hospital bed in Kawempe Hospital after delivery of her baby, Quintine Christine Luutu did not forget to remind me about our sickle cell advocacy. She told me that she was waiting to have her baby grow and resume the advocacy work of which she had taken a break. The conversation we had it and two days later on 18^th September 2016 Quintine breathed her last.

Quintine Christine (RIP)

It was a time of mourning for losing a colleague on the frontline and fellow advocate. What we did not know was whether we shall see her son grow into a big boy. It was morning which we were not sure what would happen next. Its good news that his son made two years on 15^th September turning into a big boy. Today I find myself at crossroad whether to mourn Quintine or celebrate Maurice as morning.

Quintine’s life teaches us a lot more about life and living a positive life. Battling with sickle cell and not lamenting about life is what the lesson I learn from the life of Quin as we used to call her. She did a Bachelos Degree in Business Statistics which is not for faint hearted. All the time I met her at MUBS Campus she looked determined and was not in any way thinking of being cry baby and giving excuses to fail.

I have seen people with sickle cell disease looking at themselves as fragile and look at life in a negative way. Our ways of thinking shape the society perspective on sickle cell. If you look at sickle cell as pain only disease the public will also thing that a sickle cell warrior can’t achieve anything.

Maurice Muwanguzi

Quintine passed on but she brought to the world Maurice who brightens our morning everyday. Its a day of mourning of Quntine and celebrating her life and even the life he left with us (Maurice).

Health promotion is a partial solution to improving sickle cell healthcare

Today 19^th June Uganda joins the rest of the world to commemorate World Sickle Cell Day and the national function will be at the Ministry of Health Headquarters in Kampala. We are marking 10 years ever since the United Nations declared June 19^th as World Sickle Cell Day in order to raise awareness of the disease in the world. The theme for this year is “Break the silence, lets care”.  It’s a good call for everybody to come out and stop the silence about this silent killer that is claiming many lives every day in Uganda and around the world. The Ministry of Health and all stakeholders in the sickle cell fraternity are calling everyone to stop the sickle cell related stigma and discrimination in the society and mistreatment in health facilities of people living with sickle cell disease.

To achieve this, we need sickle cell health promotions campaigns that target all audiences. Health promotion is the backbone to all the programs of improving the quality of healthcare of people living with sickle cell disease and realize a sickle cell free generation in future. World Health Organisation (WHO) argues that health promotion enables people to increase control over and to improve their health.

Our medical culture has always emphasized pharmacosurgical interventions that produce immediate results whose dosage can easily be defined and controlled. Over the past few decades, there is an increasing recognition that biomedical intervention alone cannot guarantee health.

The medical culture of prioritizing pharmacosurgical interventions has deprived people an opportunity to live a life which is not managed by drugs all the time. The effect has been increased household spending on healthcare leaving little for investment. Most of the diseases treated in healthcare facilities can be prevented if health promotion campaigns are taken as a priority to make the population aware of the best preventive measures.

As we commemorate World Sickle Cell day we need to reflect on the strategies that can be put in place to reduce on the 20,000 babies born with sickle cell disease every year in Uganda. We also need to see that those born can be able to survive and live productively into their adulthood.

Our experience and interventions as Action Against  Sickle Cell Disease has proved that health promotion is more relevant today than it was yesterday in addressing the issue of healthcare for people with sickle cell disease. One strategy we have employed has been homecare management of sickle cell where parents, caregivers and patients have been trained on how to better manage at home. The strategy has been having much input from the population through sharing their experience with others as well as taking into consideration the cultural beliefs and income status of the people.

In February 2018 Action Against Sickle Cell Disease working with our partners we conducted homecare sickle cell management for our clients at Ngora Health Centre IV sickle cell clinic to prepare them for the rain season. Most of the people became aware of factors that could trigger crises and how to prevent and detect crises early. In the last 6 weeks we have only receive one person who came in need of IV, out of more than 700 registered patients. The results have been good and worth replicating in other health areas.

Sickle cell is a public health concern that’s needs multiple interventions to promote healthy living. We need collaborative initiative with the community to understand the cultural beliefs and behaviors and educating them about sickle cell to produce desirable results. This approach will empower individuals and communities to take actions for their own health, foster leadership for better health, promote inter-sectorial action to build health public policies and create sustainable health systems in the society. We need to have sickle cell awareness as core of any sickle cell intervention program. To undergo any behavior change, the person first needs to become aware of what he or she is going to change.

The advancement and penetration of technology should be a tool to harness health promotion campaigns. Technology is a double edged sword which can be used to promote right information or distort the facts.

The highest possible standards of healthcare for people living with sickle cell disease depends on a comprehensive, holistic approach which goes beyond the traditional curative care involving communities, healthcare providers and other stakeholders.

GRAND RISING: Stand UP and Unite to Conquer Sickle Cell in Ngora

Standing with Hon. Anapa Ojirot Ngora District Speaker

Right Honourable Speaker and the Honourable members, thank you for this opportunity to address you on this pertinent issue of sickle cell that is threatening the health, social, moral and economic well-being of the people of Ngora and Teso Sub Region whose interests you represent.  It’s an enormous privilege to be here with you this morning.

If I had stood here one year ago on 29^th March 2017 you would all have laughed at me to make a case am going to make today, for two reasons; one I am not from Ngora, I come from Bukomansimbi and how would I have stood here to say much about Ngora. Two you would have asked me for the numbers of people with sickle cell disease in Ngora which I would not have had then. I believe even if I had quoted the statistics you would have asked to put human faces on those stated statistics.

Let me state the statistics which are from the Ministry of Health’s Uganda Sickle Cell Survey (US3) of 2015, 19% of people in Ngora are sickle cell trait carriers and 2.2% have the disease. This put Ngora on the list of districts with highest prevalence of sickle cell trait and disease. 19% of the sickle cell trait means that 1 in every 5 people in Ngora carry the sickle cell gene. That’s one out of 5 teachers, one out of 5 prisoners, one out of 5 students, one out of 5 civil servants and one out of 5 district council members. Count 5 people where you are and know that it’s possible one of you being a sickle cell carrier knowingly or unknowingly.

Being a carrier of the sickle cell gene/trait doesn’t mean that you have sickle cell disease but it means you carry one sickle cell gene and one normal gene. Being a carrier you will not be affected and you will live normal life but the effect is on your children, that’s where the danger is. In fact it’s a nuclear bomb that has been exploding silently and the results are these many children with sickle cell being born in Ngora.

If you are a sickle cell carrier and marry another person who is a carrier that’s when you have a chance of giving birth to children with sickle cell disease. You can’t know that you are a carrier unless you test for your genotype. To reduce on the number of children born with sickle cell and with time realize a sickle cell free generation we shall need to do a few things rotating around health promotion/education and prevention. Everybody needs to know about sickle cell starting from you who is here. Our slogan for this sickle cell free generation campaign is “Each one teach One”. Pass on the knowledge you have received today to your constituents.

The government through the Ministry of Health introduced new born screening and free sickle cell screening for children between 0-2 years to help identify those with the disease early and also help everyone know their genotype. In Uganda 20,000 babies are born with sickle cell disease every year and 70 – 80 percent die before celebrating their fifth birthdays. Some of the reasons for these deaths include no diagnosis or late diagnosis depriving them of the opportunity to receive the right treatment and attention. How many children from your constituency have been screened under this government program? That’s a question I leave to you to answer during your free time. Ok if you want you can whisper to your neighbor, “Did you know that this program exist in Ngora and at no cost?”

As you still answer that question let me share with you our experience as Action Against Sickle Cell Disease for the last one year we have here. We came to Ngora a year ago and reached out to the District Health Officer (DHO) who Okayed our idea of starting a sickle cell clinic which and the Health Centre IV administration welcomed. This clinic has been operating every Thursday.

A short background of this clinic, when we started the sickle cell clinic at Atutur Hospital in September 2015 people from Ngora started to access the services but we realized that it was expensive to go to Atutur and many even could not afford. Pastor Larence Lantz and his wife Rebecca could help with transportation of patients to Atutur but could not help everyone. We thought it was necessary to have a sickle cell clinic in Ngora to be easily accessed by someone from Atoot, Mukura, Gaina, Atapar or Orisai. It was not an easy task but it was worthwhile, we started the negotiations in February 2016 and reached the deal on 15^th March 2017. Tomorrow we shall be celebrating one year of the clinic, the clinic opened the doors on 30^th March 2017.

In the last one year we have registered numerous achievements, so far we have 400 registered patients and most of them are residents of Ngora Districts and others from Kumi. The average age of the patients is 10 years and the eldest is 60 years.

We are grateful to the staff at Kobuku who have made sure that clients are satisfied with the services. We have had full support of Pastor Lawrence Lantz of Ngora Baptist Church and family who have always donated drugs and other supplies plus supporting health promotion campaigns to raise awareness and sensitize the public about sickle cell.

We have started programs to visit patients most especially those who are not able to come to hospital and some have been picked, brought to the health centre received treatment and taken back. We also started a program to remind those who have not been coming back for reviews and treatment and so far the results are positive, more are coming back.

We have had challenges and one of them is the death of people with sickle cell. In the last one month we have lost 5 children to sickle cell disease and all of them are above 10 years. The public needs more sensitization and avoid complacency.

We have come before you to make three prayers to this honorable council

1. To recognize the sickle cell clinic as one of the clinics at Ngora Health Centre IV.
2. To allocate space for the sickle cell clinic. When we opened up the clinic we were at ART clinic and now the clinic is at HIV Adolescent Centre.
3.  Sickle cell is considered as a priority area during your budgeting process especially the crucial part of awareness and sensitization.

Thank you very much, Eyalama.

Ssebandeke Ashiraf

Executive Director

Action Against Sickle Cell Disease

Health promotion and prevention will save our lives and economy

As I was resting on the flat bed in one of the smallest units in Mulago Hospital, Chiropractic Unit a retired civil servant and former career diplomat walks in painfully. He sits on one of the bench which are not that cool but looks like ones used in village meetings. He greets me as I was busy scrolling through my phone to avoid boredom. I had been at the unit for 5 hours then waiting for my turn. He wished me quick recovery and even ask me why am at “their place”. Most of them who always find me at the unit ask me the same question, their uniform reasoning is that someone of my age is not supposed to be at that facility because he has not made the “mistakes” in life they made. For the last 3 years I have spent getting treatment at the same unit it has been the same question.

I remember a lady who came and she decided to lie on the carpet, I asked her to sit on clean chair and she said sleeping on the dirty carpet is the price she is paying for not doing what she was supposed to do.

Most of the diseases that are rampant are chronic or lifestyle diseases which are mostly Non Communicable Diseases.

According World Health Organisation (WHO) Noncommunicable diseases are by far the leading cause of death in the world, representing 63% of all annual deaths. Noncommunicable diseases (NCDs) kill more than 36 million people each year. Some 80% of all NCD deaths occur in low- and middle-income countries.

Most of the non-communicable diseases are avoidable and can be prevented if there is health promotion that can make people aware of the dangers. Most people when their income status is elevated they think of changing their diet to junk foods making their bodies a breeding ground for a number of lifestyle diseases. In our society when someone’s income status changes the public also expect their bodies to change and we have ended up with obese people. We give more respect to obese people than healthy people innocently thinking that they are the health ones.

Back to my starting paragraph most people who have office jobs have ended up getting back problems as a result of the lifestyle they choose. It took me long time to understand the statement from the lady who said that she was paying the price. I was wondering which price until when I realized that most people who are in offices and have cars neglect their bodies. For example someone wake up enter the car and go to work, sits in office chair which actually are not the right chairs. After work they enter the same car go home and sit the sofa, watch TV and sleep, the cycle continues. If the car gets a mechanical problem it will be taken to the garage for service. But the same person neglects their bodies and don’t service them. In my Financial management class at the university we used to have a clear formula for pay back period (PBP), so that's how life is whatever you do you will pay back. There might not be a clear formula but there is that time

We spend a lot of money and other resources to treat lifestyle diseases than we would have spent on health education to prevent the same diseases.

UNVEILING FEED A WARRIOR PROJECT AMBASSADOR

Joyce El is our Feed A Warrior Project Ambassador

Joyce El is a passionate Community Advocate, Author, TV/Radio Producer and a Visionary who helps individuals find hope and helps them to come to self-realization through faith and perseverance. Joyce believes that we overcome by our testimony and your testimony may save a life.

Joyce is known in her community as “Duchess” because of her compassion for others. Several years ago, Joyce was a victim of domestic violence and God gave her a mission to become a passionate Life Coach and Inspiration Speaker. In October 2010, the inspiration known as “Journey’s By Grace – Stories of Spirit, Energy, Faith and Love” radio & TV broadcast was created and Journeys by Grace Global Missions Inc was founded. This inspiration has driven Duchess toward her passion as a dedicated Humanitarian and Missionary.

Duchess Joyce El is actively involved with various humanitarian and business initiatives including Ghana, Gambia, Uganda, Kenya and Nigeria, Africa. The Duchess is a Co-Founder of Queen of Hearts Mentoring Project and serves as an advocate against “Human Trafficking” and “Domestic Violence”; International Director & an Administrator of the Sickle Cell Disease Foundation- Shawns Testimony.Com. She actively serves as Founder/President of numerous CBO’s in Kenya and planning committees globally. Duchess has created successful children self-advocacy programs and Art Therapy projects for youth with sickle cell disease and related issues travel extensively to speak and host seminars for sickle cell advocacy.

Joyce Duchess El is the author of the book “Journey through a Narrow Gate in search of a Pearl” and Executive Producer of the independent film “The Movie- The Book” and directed/produced numerous documentaries.

Duchess holds an Honorary Ph.D. in Christian Counseling, a Certified Life Coach for Children Self-Elevation, Honored International Missionary and holds a BS in Business Management and an Associate Degree in Film & TV Production.

Presently, Joyce Duchess El and a team of medical clinicians will host a Humanitarian Medical Mission Trip to Kenya to conduct medical exams, treatment and education June 8-July 8, 2018. During this time Duchess will also host a women empowerment conference; visit orphanages and schools in Kenya and Uganda.
https://journeysbygrace.weebly.com/