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

RIP Xavier

Excerpts from my book Abby and Her Guitar a children’s sickle cell book which Francis Xavier Ssendagire (RIP) read and gave me good feedback. He was the first person to read my manuscript.

“We have soldiers in our body that fight enemies to keep us safe. We have some soldiers that fight against diseases and others that keep our bodies strong like superman. Soldiers in our bodies are like policemen. They protect us from enemies. When you have sickle cell disease, your soldiers are not strong enough. So they are easily defeated. So Aunt Joan did not want your soldiers to be defeated when you remove your sweater. Your soldiers are not strong as other children who don’t have sickle cell. You have to put on a sweater when it’s cold to protect your soldiers from those strong enemies”

A chat with Cuthbert

A chat with Apotu John Cuthbert a 10 year old boy with sickle cell disease shows hope restored when he started to attend our sickle cell clinic in Ngora. Apotu was born with sickle cell disease and lives in Gawa village in Ngora district. He was missing many class days due to his health and had nowhere to get treatment from. Apotu was happy to be promoted to Primary 3 and will be in P3 come 2018. His peers he started school with are now in Primary 5.

Apotu has been repeating classes because he was not attending classes and had forgotten about going to the next class.
Ever since we opened up our clinic in March 2017, Apotu got an opportunity to get the treatment needed. This helped him to attend all classes which helped him even pass his exams. His face potrays a young boy with a bright future.

Donations towards this clinic will help Apotu and other children not only to have a good health but also stay in school. 

You can inbox us for more details or call us on 0779 210 960 or 07010288807 or 0701 042239 and we pick up the drug

Buganda has a duty to contribute to the sickle cell cause

On Friday 24th November 2017 the Katikiro of Buganda, Charles Peter Mayiga handed over sickle cell testing kits to Uganda’s Ministry of Health at Uganda National Health Laboratory Services Headquarters in Butabika. The testing kits were bought from part of the proceeds of the Kabaka’s birthday run that took place early this year.

There have been arguments about what the money would have been used for, some people are saying that the money would have been used to build a sickle cell treatment centre or buy drugs for people living with sickle cell disease. But that is not my focus today as those who are responsible prioritized screening those who do not know their sickle cell status to help on reducing the 20,000 babies born with sickle cell disease everywhere.

My article today is going to address the concern of those who believe that the kits should be only used in Buganda since the run where the money raised was in Buganda. I strongly disagree with them basing on the fact that it was not only people from Buganda that participated in the run. Also Buganda has people from different parts of the country and if sickle cell is not prevented from where they are and “wait-and-see” we may be late forever.

Buganda region ranks third with highest number of sickle cell disease and trait cases after Eastern, with Northern region topping the chart according to Uganda Sickle Cell Survey (US3) 2015.

Most importantly the historical contribution of Buganda to sickle cell disease and trait prevalence in other region puts it in a position where it has to shoulder the burden of eliminating sickle cell disease in the whole country and other parts of Africa.

The version of Kabaka Kintu’s rising to the throne is said to have happened after the defeat of Bemba Musota at Nagalabi in Buddo. After the defeat and execution of Bemba Musota, his royalists migrated into other areas. One group moved eastwards and settled on the shores of Lake Kyoga in Teso and assumed the name of Bakenyi.
The second group moved westwards and settled in current day Rubirizi district and became Banyaruguru. The last two groups moved southwards, one group settled in Ssese and the other group moved through Kiziba current day north Tanzania and settled in Northern Zambia and became the present day Bemba people.

The groups that were exiled from Buganda could not marry the natives where they settled and were left with nothing to do but marry between themselves. The intermarriages between relatives led to the giving birth to children with sickle cell disease. For a child to be born with sickle cell disease both parents must be carrying the sickle cell gene.

Because of the marriages between relatives and with no chance to marry from the natives of where they settled ended up giving birth to many children with sickle cell disease.

It’s not surprising that Rubirizi district where the exiled Baganda settled and became Banyaruguru has the nucleus of sickle cell in Ankole region. The Bemba people in Northern Zambia also have the highest prevalence of sickle cell disease and trait in Zambia.

The advantage the people in Buganda who did not go into exile and ruled over by Kabaka Kintu was marrying between clans. The clan intermarriages ensured that people carrying the sickle cell gene could marry another person without the gene and save their children from inheriting the disease.

The Buganda’s battle for the throne contributed greatly to the rise of sickle cell prevalence in Ankole, Teso and Zambia. It is this role that puts it in upper position to champion the cause for elimination of sickle cell disease not only in Uganda but globally as it contributed to the high prevalence of sickle cell disease and trait in those areas.

Souvenir from Dr Wafula

For many years I had been told of a doctor who always gives whatever he has including his precious time to treat people with sickle cell disease in Kenya. I always wanted to meet him and say thank you or Asante sana. I had missed all the opportunities to meet him. In July I got a golden opportunity and met him at Baraka hospital sickle cell clinic in Mathare. I was extremely excited. He decided to remove his bracelet and gave it to me as a souvenir. Everytime I put it on it gives me more courage to continue with the sickle cell cause.

Story mother of 5 children with sickle cell

Hellen Amoding is a primary school teacher with 4 children having sickle cell disease. She is one of the beneficiary of our sickle cell clinic at Ngora Health Centre. Read the full story in today's The New Vision Page 40

Atapar Primary School

As we were seated in staff quarters talking to a teacher at Atapar Primary School in Ngora District who is a mother to five children with sickle cell the Head teacher sent one of the pupils to call us to his office.

What came to my mind was what had we done wrong, was it that because the teacher was in a staff meeting by the time we came, I was worried that we may have caused problems for the teacher.

As we went to his office we found an office full of teachers, he asked me with my colleague to sit in front of him. The choice confirmed my suspicion and I was ready to be grilled.

After the introductions he asked us why do we always deny them an opportunity to hear the sickle cell message, that we come and don't get to his office. Of course I defended myself.

He gave me an opportunity to speak to his teachers. I used the opportunity to enlighten them on how they can handle pupils with sickle cell disease. The school has a number of students with sickle cell disease.

The school has two teachers having sickle cell disease; one has 5 children and another teacher has one child.

The head teacher invited us to give a comprehensive sickle cell talk to his teachers and students.

#Sicklecellawarenessmonth

Group photo with teachers of Atapar Primary School

Sickle cell beach party

As it went down on sunday at Sports Beach for Sickle Cell warriors Beach party #NoPainattheBeach

Carol Taaka

Travelling 300 kilometers away from Kampala our capital to meet Carol a 19 year old who looks like a 10 year old girl. She is living with sickle cell disease in Busia district at Uganda-Kenyan border town. Sitting down to have a chat her you realise the confidence she has. 

When she was diagnosed with sickle cell at 16 years her parents and herself were told by community members that she will not live past 18 years.
"When I made 18 years it was a school day and I went to school but was absent minded. I was only waiting to die. I went back home and when I went to bed I never expected to wake up the next morning. The next day I woke up still alive and kicking. I was too excited to be alive. It was like another birthday and a new lease of life. Am still asking myself why did they have to give me a time limit" she teary speak.

In the area where she lives most girls are allowed to study the primary level and after they are married off. She is completing her primary level next year. Carol is just a year away from getting married.

Sickle Cell Warriors Beach Party

Save the date for the first Sickle Cell Warriors Beach party happening on 11th December 2016 at Sports Beach Entebbe. Lets come and meet other people with sickle cell disease. Get to know that you are not alone.

Come with your younger warriors, come with friends and spouses.

Entrance is 3,000/= payable at the beach gate.

We want you to have unlimited fun so everybody will manage own menu.

Come have fun, meet and greet.
For more information Call/Whatsapp 0779210960/0701288807
#unlimitedfun #Nopainatthebeach