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/

Kitenge addict

12 years ago Lawrence Lantz and his family left his career as an engineer in Philadelphia USA to come to Teso in Uganda. His work has changed many lives in Teso, widows, children with HIV and those with sickle cell disease.

Ngora staff serving above self

It feels nice to work with dedicated team at Ngora Health Centre IV Sickle Cell Clinic. 
That moment when they tell you don't start the meeting until when we are done with seeing clients even when it's not a clinic day. And you have to wait.
Dedicated team that wants to see that no child with sickle cell is in pain.

8 warrior heroine: Arafa Salim Said

Tonight on this International Women's Day we end our 8 warrior heroine series with Arafa Salim Said.

If hearts were categorised in terms of precious minerals she would qualify to be "A Girl With Golden Heart" for selfless love and service to the sickle cell community.

Arafa Salim is a 2017 Sickle Cell 101 International Sickle Cell Advocate of the Year recipient. She graduated with Degree in Business Administration from Greenwich University in 2012. Arafa is an example of a mother and a sickle cell patient and a true example challenging the taboo.

Arafa is a founder of the Sickle Cell Disease Patients Community of Tanzania, and has invested over 7 years on heavily crusading against the misinterpretation and misinformation surrounding the disease.

Under her leadership, the Sickle Cell Disease Patients Community of Tanzania has organized fundraising events, hospitals and school visits, charity walks, and blood donation events. You can find Arafa educating and supporting the sickle cell community across various social media platforms participating and engaging sickle cell community members .

Additionally, Arafa and the Sickle Cell Disease Patients Community of Tanzania have partnered with the Doris Mollel Foundation for premature babies to raise awareness. She is lobbying the Tanzanian government to sponsor free genotype testing for new born babies in the efforts to reach a sickle cell free nation.

Arafa volunteer her time as a clinic assistant supporting both medical staff and providing activities such as arts and crafts for sickle cell patients.

Arafa is a big believer in giving back to the community and has worked tirelessly with all media platforms including television, radio and newspapers to make sure sickle cell disease patients are not sidelined and stigmatized; often drawing from her own experiences as a sickle cell warrior to help raise awareness.

8 warrior heroine: Marie Ojiambo

Our 8 warrior heroine we are celebrating on this International Women's Day is Marie Ojiambo. We always complain that there is limited choices of drugs when it comes to management of sickle cell disease, but when we are asked to participate in a clinical trial we ask many questions and when they are answered we end up saying, yeah you have answered but you don’t understand sickle cell. Marie Ojiambo has provided a solution and is the right person to answer most of these questions being born and diagnosed with sickle cell at 1 year. Marie has a Doctorate of Pharmacy degree from the University of Nairobi, School of Pharmacy and Masters in Industrial Pharmacy at St. John’s University in Queens, New York where she majored in drug research and development studies.

She was on the team that created oneSCDvoice an education platform that gathers credible disease information and empowers people impacted by SCD.

Marie was Miss Kenya USA (2013) and the People’s Princess Miss Africa USA (2013).
In 2013, she founded the Sickle Strong Initiative (SSI), a Kenyan based charity that helps sickle cell warriors and their family members. Through Ongea (meaning: to speak out!), a platform for sickle cell warriors to talk about their condition, share and interact, has provided an opportunity for the warriors to engage with and challenge the government, the pharmaceutical industry, insurance companies, CBO’s, NGO’s, other stakeholders as well as the public on what they are doing to improve the health care and environment that sickle cell warriors are exposed to.

Marie has received a number humanitarian awards and honors from the Kenya community for her efforts in raising sickle cell disease awareness.

8 warrior heroine: Samira Sanusi

Our 8 warrior heroine we are celebrating tonight is Samira Sanusi
Going through a difficult situation and triumph over it is joyous. It takes an individual with rare character to spend 7 years in hospital and undergo 28 surgeries and being cured of sickle cell disease through bone marrow transplant to care about people with sickle cell disease.

Samira Sanusi is a Nigerian writer and Sickle Cell awareness advocate. Samira is the Founder and President of the Samira Sanusi Sickle Cell Foundation, an Abuja-based NGO. She is also the Director PR for Water for Sustainable Living Initiative. Samira is the author of an award winning memoir “S is for Survivor”, about her personal experiences with Sickle Cell Anemia and getting cured. Samira is also the author of “I Wrote This For You” a collection of prose, poetry, philosophical quotes and short essays.

Through her foundation Samira Sanusi Sickle Cell Foundation raises funds for organizations and clinics that provide Sickle Cell patients with care, aid, and treatment. Its focus also includes creating awareness on the cure for Sickle Cell disease and finding ways to make it accessible for patients in Nigeria.

Her foundation has run a number of campaigns like know yours sickle cell status, warrior not sickler, clothing Drive for sickle cell where they give clothing to support sickle cell warriors in IDP camps and other rural areas.

Samira graduated with a degree in Business Administration from Trident University International. She was named among 100 Arewa influential people

8 warrior heroine: Lea Kilenga

Our 8 warrior heroine we are celebrating today is Lea Kilenga. They always say in sickle cell every case is different but you will not understand that statement until you meet Lea and learn how she lives her life on alkaline foods. You may try it and fail but for Lea it’s a success and it shows how every sickle cell case is different.

Lea is a sickle cell advocate from Kenya who started Warrior 10003 Project that creates sickle cell awareness one face at a time. Lea has profiled a number of sickle cell warriors, told their stories and brought them to the front pages to show that sickle cell really exist in Kenya. With every photograph and story posted, she hopes to give a voice to the voiceless that are only heard in closed circles and in hospitals (if they are fortunate enough). Lea is aiming at creating a new outlook on SCD, not as an obstacle but as an opportunity to expand and grow.

Lea founded a nonprofit African Sickle Cell Organisation which on February 3rd 2018 collaborated with Isuzu East Africa and Taita Taveta First Lady Stellah Samboja to launch Sickle Cell Anaemia awareness campaign at Rekeke Model Health Centre in Taveta where 50 warriors will benefit full NHIF cover where they will be able to access the medical treatment for free.

8 warrior heroine: Peggy Odoyo

Our 8 warrior heroine series woman we are celebrating tonight is Margret Odoyo Peggy Pegz Nyarae

If being quiet, soft spoken and calm meant you could not be a sickle cell advocate Peggy would have been disqualified many years ago. Her soft spoken character is what makes her a strong sickle cell advocate in Kenya. Like what they say its the softness of the chain that makes it to more efficient. Being born with sickle cell disease has not stopped Peggy from helping other people with sickle cell in Kenya.
She is someone who will show up on any sickle cell event organized in Kenya.

Peggy Pegz Nyarae is the Secretary of Children Sickle Cell Foundation of Kenya for almost 10 years which she joined in 2007. She is a social media savy who will not hesitate to update you on whats happening in the sickle cell arena in Kenya.

When you mention Peggy its a familiar name to everyone in the sickle cell circles in Kenya. Cscf Kenya
#8warriorheroine #sicklecelladvocate #PressforProgress

8 warrior heroine: Prossy Nabirye (RIP)

For any parent with a newly diagnosed child with sickle cell disease Prossy presented with glamour of hope, she counseled many and helped them come to terms and understand the diagnosis. She was a source of hope to adult with sickle cell, Prossy was a living testimony. She was one of the sickle cell champions in Uganda.

She was a volunteer counselor at Mulago hospital sickle cell clinic and had worked with Sickle Cell Association of Uganda. Prossy passed on at the age of 38 years on 10th May 2015 and buried in Mayuge District.

She might be gone but not forgotten, Prossy's work is still touching many lives up to today.
#8warriorheroine #sicklecelladvocate

8 warrior heroine: Ifeoma Christine Ifejika

Today in our “8 warrior heroine” series I bring to you Ifeoma Chrys-Bernadette Ifejika from Port Harcourt, River State in Nigeria. Ifeoma Chrys-Bernadette Ifejika is a 51 years old lady living with sickle cell disease and a consistent advocate for better care and cure for sickle cell disease. Her work has positively changed many lives both in Nigeria and Uganda though her sickle cell advocacy organization called Sickle Cell Interactive and Management Association (SCIMA).

Hundreds of people with sickle cell disease in Uganda have benefited from her donations and their lives changed forever. She knows that sickle cell has no border and her work her gone beyond Nigeria’s border.

Ifeoma believes that living with sickle cell must not define you.
“Never live your life with your mind wrapped around your condition, aspire to be all you can be in spite of your condition.”

She has helped many warriors, those younger than her and those older than her.

Currently through SCIMA she is working to see that many people with sickle cell especially in Nigeria can get cured of sickle cell through bone marrow transplant locally in Nigeria.

8 warrior heroine: Nankanja Ruth

The name Ruth Nankanja symbolizes the beginning of sickle cell advocacy movement in Uganda. The now 40 year old lady started Sickle Cell Association of Uganda in July 2000 when she was just 22 years. She had just graduated from the prestigious Makerere University with a degree in Education. She has has been a consistent advocate and inspirational to many. Ruth contributed to the sickle cell advocacy movement in Kenya. She initiated sickle cell educationand counseling at Mulago Hospital Sickle Cell Clinic and with her leadership the clinic moved from plywood to fully furnished building operating 5 days a week.

Her plan is now to have a sickle cell centre which work 24/7 with all the services which they started mobilizing resources for through Annual sickle Cell Run.
What Philly Bongole did for AIDS is what Ruth Nanjkanja did for sickle cell in Uganda
#8warriorheroine #sicklecell

8 warrior heroine

On Thursday 8th March the world will be commemorating International Women's Day. To commemorate this day from Monday to Thursday I shall be bringing to you 8 African women with sickle cell who are making a difference in the sickle cell arena. Women who don't only think about themselves but work hard to bring out sickle cell from the "medical ghettos". The fearless sickle cell advocates.
I will bring you ladies who found purpose in their pain.
We can tell our story better than anyone else.

“Until the lion tells his side of the story, the tale of the hunt will always glorify the hunter.” West African Proverb
#warriorwomen