Featured Storyteller

UGANDA: Love, Work, and Sickle Cell

Juliet Acom
Posted April 18, 2018 from Uganda
Juliet and the parents of children with sickle cell disease in Nyamirima. Photo courtesy of Juliet Acom.

After her child was diagnosed with sickle cell disease, Juliet Acom made it her life’s mission to educate others.

“A problem shared is half solved, and when I do this work it helps me to release some of the stress I feel as a single mother with an ill child.

It’s 16:00 hours on a hot, dusty December Saturday. I am seated on a veranda of a semi-permanent house in a remote village in Nyamirima, Western Uganda. I do not know anyone here. I speak the language horribly, so I just limit myself to making funny faces at the children who are staring and giggling around me.

I let them ruffle my kinky maroon hennaed hair, as I smile and wave to the people around me. My translator, a primary school teacher, has since gone back to his home, walking five kilometers away from the mission grounds where, two hours before, we were helping families of children living with sickle cell disease.

Finally, my ride—a battered 1995 Sahara pickup truck—arrives and I am hoisted into the back by a jolly old man who seems bothered that I only understand about 25% of his stories. As we drive towards the town where I will grab the night bus back to the city, I feel a calming sense of joy. I wave at my new friends as we drive away, leaving a trail of dust.

I am exhausted and feel an oncoming headache, but I am equally elated that my Saturday was well spent educating total strangers about genetic disorders. I provided counseling and information about nutrition for sicklers and natural pain management as an alternative to strong painkillers. On that day, I felt proud that I was able to dispel fears about sickle cell disease. I helped families to understand that sickle cell is not caused by evil spirits that only live in women and that are supposedly curable by witchcraft and animal sacrifice.

You see, I have made it a life goal to travel to remote villages to share my own story—the story of a single mom raising a child with sickle cell disease. I share my story to stand with families and economically empower communities affected by the stigma that arises from lack of information on this disease that, according to statistics from the World Health Organisation, affects 5% of the world’s population.

In a country where many live on less than a dollar a day, the only treatment for the disease, an expensive bone marrow transplant costing over 80,000 USD in Europe, America, and Asia, is but a dream. Prevention is the only way. It is important for youth to know that just as they carry out HIV/AIDS tests in preparation for parenthood, they should also make it a priority to run a sickling test.

In my efforts, I have met resistance, especially from absentee fathers of children living with sickle cell. My pleas, cajoling, and continued reminders have inevitably brought them to government medical facilities to learn how to manage the illness—just to get me off their backs. In this work, there is no giving up! The fathers are usually resistant because it is assumed that these children will not live long. They prefer to spend those finances on children who are not sick. The burden of care, and blame, is left to mothers.

I know this story personally.

Eleven years ago, my son was diagnosed with sickle cell and I was left shattered. All I knew about the disease was that it definitely led to death. The nearby clinics I went to had no clue about treatments, and the government hospital to which I was referred was overwhelmed with a doctor/patient ratio of 1 to 40. There were just a few volunteer counselors who would come in twice a week to ask routine questions, give nutritional information, and provide medical information to those with sickle cell.

My experience led me to learn and gather as much as I could about the disease so that I could help my son and others in underprivileged communities. The more I shared my story and reached out to parents in similar situations, the more I was able to come to terms with my son’s condition and help him to manage it better. They tell us a problem shared is half solved, and when I do this work it helps me to release some of the stress I feel as a single mother with an ill child. Along the way, I have helped others release their own stress and realize they have support from someone going through the same thing.

Anywhere I go, the questions come in different languages, from people of all ages, sizes, and socio-economic backgrounds, but they are all the same: What is the best diet for someone with sickle cell? Which hospital is best? How can I involve my partner in taking care of my child? Will my child have a normal life? How will I manage to care for them and keep my job?

These were questions I used to ask myself, and thankfully I am now able to answer most of them for others. I have learned so much from online networks and online research, and I have been able to share that knowledge with the communities I reach.

I celebrate the existence of reliable, effective communication tools in this generation that have allowed me to access knowledge, connect with others, and share my stories. Social networks have enabled many of us to freely express our fears, share our challenges, and find support.

I have found places where I can crack jokes about the cultural stereotypes following single moms without being “too careful.”  These networks help us to soldier on, fight, stigma, and most of all keep faith in emerging solutions.

I am committed to educating all so that we can prevent this disease and bring solutions to the forefront for those who are suffering. I hope that by sharing my story hope will be restored to families affected by sickle cell, and that they in turn will be inspired to reach out to others as I have done.


STORY AWARDS

This story was published as part of the World Pulse Story Awards program. We believe everyone has a story to share, and that the world will be a better place when women are heard. Share your story with us, and you could be our next Featured Storyteller! Learn more.

Comments 61

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Gladys Muthara
Apr 18, 2018
Apr 18, 2018

Juliet, you are a phenomenal woman! The world is truly becoming a better place because of your efforts, to help others learn from your experiences and prevent sickle-cell. I know for sure it's not an easy task, moving from one remote village to another while educating women and men alike, but I know for sure that it shall pay off, eventually. My sister, keep doing the incredible work you have already, so courageously started. With much Love, Hope, & Light

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Dear Gladys,

Thank you for the feedback and uplifting words.

Your response gives me more confidence to keep educating people about sickle cell and You are very right, village transport and communication can be interestingly challenging. It is my prayer to come to Kenya on this mission sometime and I do hope we shall meet.

Best Wishes

Elsie Amegere Zion
Apr 19, 2018
Apr 19, 2018

Awesome. Your 1:10 one woman in ten men. May God increase you.

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Dear Elsie,

Thank you for your kind words, they give the strength to soldier on.

Opolot Hartie Harriet
Apr 19, 2018
Apr 19, 2018

I have seen you go through the tougher times of the days. But I have not seen you give up on any single day. You're a phenomenal woman. God bless you and the work in your heart.

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Dear Harriet,

Thank you for your wonderful words of encouragement and support.
God bless you too.

jlanghus
Apr 19, 2018
Apr 19, 2018

Hi Juliet. Congrats on winning the story award. Looking forward to seeing and hearing more about what you're doing. I would also love to hear more about your collaboration with Dorothy:-) Have a great day!

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Hi Jlangus,

Thank you so much, I am truly honored and grateful to World Pulse for giving women a platform to connect and share their stories.
I am looking forward to meeting Dorothy and we shall be back here with details.
I wish you a pleasant week ahead.

jlanghus
Apr 23, 2018
Apr 23, 2018

You're welcome:) Yay! You, too...

julie_7
Apr 19, 2018
Apr 19, 2018

What an amazing story of resilience, the world is definitely a better place because of people like you Julie who look beyond their own challenges and share with others. You're an amazing woman.

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Thank you so much for these kind words, they give me courage to keep educating others about sickle cell.

Clodine Mbuli Shei
Apr 19, 2018
Apr 19, 2018

Oh Juliet,
What a great woman you are! Exploring knowledge and sharing to give hopes yo others is such a fulfilling life. Courage on your work. Its challenging and takes heroines like you to brave it. Courage

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Dear Clodine,

Thank you for the encouraging words and I must commend you for the great work you are doing in Cameroon, promoting menstrual health - the PAD IN A BAG campaign! I do hope we can share ideas sometime soon.
Many parents of girl children living with sickle cell focus on the disease and mostly worry about what will happen at the onslaught of menstruation. We must encourage them to prepare the minds of their little ones to embrace this milestone in womanhood when the time comes and to involve male relatives in supporting safe menstrual health practices.

Best wishes

dhatemwa Ag-ee
Apr 19, 2018
Apr 19, 2018

This story is inspiring and touching at the same time, Julie keep breaking the silence, keep fighting the stigmatization in the communities we live in. The fight has just began, we have to do this together in order to keep hope alive for children, people with sickle cells plus their parents. Thanks for sharing, who am I to read about this great advocacy that you have started. The sky is nolonger a limit Julie.

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Dear Ag-ee,

Thank you for these encouraging words, indeed we must keep hope alive for persons living with sickle cell and their families though education.

Best wishes

maureen_3
Apr 19, 2018
Apr 19, 2018

Wow what an inspirational you are Julie... U have indeed showed that not even any condition can deter you from helping others... Keep it and God bless you always

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Hi Maureen,

Thanks so much for these uplifting words.
God bless you too.

Best wishes

Olutosin
Apr 19, 2018
Apr 19, 2018

Your work is amazing. Thanks so much for sharing about your personal journey with your son with our community. I'm so elated to read further that you are sharing your knowledge with others, especially people who are in remote areas with little or no access to correct information.

You are an angel.

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Dear Olutosin,

Thanks so much for your feedback, i truly appreciate it and must commend you for sharing with us your journey with gender based violence. I have seen it in different forms as i go about educating rural communities about sickle cell disease - absentee fathers, women being rejected as the cause of the children's condition, you will visit the clinics and realise that 80% of the caretakers are women - to mention but a few.
Thank you too for the amazing work that you are doing.

Best wishes

Adanna
Apr 20, 2018
Apr 20, 2018

Dear Juliet,

You are a strong woman. Your commitment to educate more people about sickle cell is a good one.

Many are inspired by your story. I salute you sis.

Love,
Adanna

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Dear Adanna,

Thank you for taking the time to read my story and for the wonderful feedback. I am grateful to world pulse for this platform that enables me to hear from other phenomenal women such as yourself.

Best wishes

Ann Forsthoefel
Apr 20, 2018
Apr 20, 2018

Juliet

It is amazing what you are doing
May you be blessed for the knowledge you are sharing

Kindly
Ann

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Dear Ann,

Thank you for taking the time to read my story and for the encouraging words.
God bless you too.

Best wishes

Adeola Samuel
Apr 20, 2018
Apr 20, 2018

I see grace! You are stronger than you can ever imagine. God bless your heart.

Juliet Acom
Apr 23, 2018
Apr 23, 2018

Hello Adeola,

Thank you for taking time to read my story and for the feed back. I am honored to share a platform with women such as yourself and you are doing great work supporting girl child education.

God bless you too.
Best wishes

Adeola Samuel
Apr 23, 2018
Apr 23, 2018

Thank you dear Juliet. Amen n may you continue to find encouragement and timely support in your work.

Sister Zeph
Apr 24, 2018
Apr 24, 2018

oh my sister you are the best and a most brave lady, I can understand how difficult it is to have a child with sickness and being a single mother, you are an inspiration for us all, your story is really changing lives Bless you

Juliet Acom
Apr 25, 2018
Apr 25, 2018

Thank you sister Zeph,

Your own story gives me more zeal to pursue this cause.

God bless you

Karen Quiñones-Axalan
Apr 25, 2018
Apr 25, 2018

How selfless, dedicated and brave you are, Juliet, for campaigning awareness on sickle cell!

Your passion and love to educate and empower are commendable. How do you do it? Wow, just wow!

My 4-year-old son has special needs, and it is a daily challenge. That is why I honor you for your commitment to reach out to communities. You did not let your circumstance to hinder you to care; instead, you use it to encourage others to hope and find solutions. Kudos to you!

You are an eagle who is unfazed by the storm. You chose to soar above it. I hope I can do the same in the future. You inspire me.

Congrats for being a Featured Storyteller!

Juliet Acom
Apr 26, 2018
Apr 26, 2018

Hi Karen,

Thanks so much for your kind words.
God bless you and your son, it is no easy task but best to take each day as it comes.

Best wishes

Bugendage Rose
Apr 26, 2018
Apr 26, 2018

Julie, you are a great woman. A woman with resilience and the strength to find the positive in every situation. A woman who puts her own pain aside to see other's smile. May the Lord reward you and your son a long life. And may He continue using you to put a smile on other mothers' faces as they walk down the path of this misrepresented sickness. Educating those parents about sickle cells and teaching them how to handle their sick children is already solving 70% of the burden they have. I am proud of you sis

Juliet Acom
Apr 26, 2018
Apr 26, 2018

Thank you Rose for these kind words. They encourage me to not give up on this cause

Musenge Musomali
May 06, 2018
May 06, 2018

Wow Juliet, you are doing a remarkable job. It is not easy to deal with these kind of conditions even in my country Zambia. I am proud of you for reaching out to other people and helping them to understand more about sickle cell. Thumbs up. Would be amazing if I can meet you at the end of this month, I will be in Kampala for a couple of days. You are an amazing person.

Juliet Acom
May 08, 2018
May 08, 2018

Hi Musenge,

It will be a great honour to meet you, your experiences inspire me alot.
Do email me details so we can plan :)

acomjacom@gmail.com

Cheers

Musenge Musomali
May 08, 2018
May 08, 2018

Hi Juliet,

Glad we have connected, see you in soon.

Juliet Acom
May 08, 2018
May 08, 2018

Looking forward my sister :)

QueenVirtuous
May 12, 2018
May 12, 2018

Hi Juliet Acom.

You are doing such a great job sensitizing and educating these women about sickle cell anemia. Wish we had women like you back in my day. What you are doing is a very great work that is very demanding, but the people are blessed by your sacrifices. Thank you.

Yes, it is a thing to celebrate that we now have technology in this day and age to help spread the word about what it means to be living with the condition. And I'm talking not just about communication technology but also medical technology to help make life easier for people living with this condition.

It takes love to fight stigma. These people are also being taught to be loving towards those who are challenged healthwise. You are also giving hope to the sufferers of this condition. How can we not be proud of you?

Please carry on the good work you are doing and write us more about it.

Juliet Acom
May 14, 2018
May 14, 2018

Thanks so much for the uplifting comments. You give me the strength and encouragement to keep doing this work.
I am working on a short compilation to be used to teach the public about sickle cell. Will surely share it here.

God bless you

QueenVirtuous
May 14, 2018
May 14, 2018

Oh, absolutely darling! I'd love to see it. Knowledge is power. I really love what you're doing. I'm staying tuned to your channel. ;-)

J Brenda Lanyero
May 17, 2018
May 17, 2018

Hi Julie, you are really a change make. I would try to fit in your shoes from all angles but still I wouldn't walk as well as you are doing.
Thank you for being that Super mum that God created you to be and thank you for not abandoning your child at his grand parents' or any other place. I saw some women doing this most times but you are exceptionally amazing my dear sister in the Lord and in PUSH

Juliet Acom
May 18, 2018
May 18, 2018

Thanks for the encouraging words dear.
Many times I have met grandparents struggling with children as the mothers come to town and start a totally new life giving up on the little ones and leaving this burden to the grand mom in the village. It is a sad reality of how much stigma is faced by the sicklers including from their own parents.

J Brenda Lanyero
May 18, 2018
May 18, 2018

I understand what you mean. I saw it a number of times.

You are one in a million and a Super mum. Praying for divine blessings and strength upon your life.

OakTrillium
May 29, 2018
May 29, 2018

Bravo! Such great work! Love your commitment and passion for what you have to share!

Juliet Acom
May 29, 2018
May 29, 2018

Thank you dear.

It is words of encouragement from people such as your self that keep me going.
God bless you!

lumnui
Jun 10, 2018
Jun 10, 2018

Juliet am grateful and inspired by your story.i think I should do same in my locality cos sickle cell is still a killer to my people

Juliet Acom
Jun 20, 2018
Jun 20, 2018

Hi Lumnui,

Thanks for taking the time off to read my story. Please do not hesitate to get in touch should need any help to organise sensitization outreaches on sickle cell in your community.
I am more than happy to help.

Ako Oku
Jun 11, 2018
Jun 11, 2018

Juliet thanks for this! Please keep up with the good work. I know some persons who died of sickle cell.

You never know how far your efforts go to preserving lives. You are a strong woman, perhaps, that's why this manifests as your divine calling.

Keep it up!

Juliet Acom
Jun 20, 2018
Jun 20, 2018

Thank you Ako.

Indeed it is the grace of God and encouragers like yourself that keep me going.

Tarke Edith
Jun 12, 2018
Jun 12, 2018

Hi Juliet you are wonderful sharing your story on this platform will help to encourage others with the same problem those who think that sekle cell deseases is a tabor will lean from you sister keep on

Juliet Acom
Jun 20, 2018
Jun 20, 2018

Thank you Edith.

I am encouraged by your words and will keep sharing my milestones with you and the rest of the phenominal women on this group.

Ese Ajuyah
Jun 16, 2018
Jun 16, 2018

Hello Juliet,

Through your story I can feel your inner strength shine forth. It takes a lot of inner strength and love to keep up with what you do
May the universe grant you more wisdom to do even much more.

Ese

Juliet Acom
Jun 20, 2018
Jun 20, 2018

Thank you Ese,

Your words encourage me to keep going. And thank you too phenomenal woman for the impact you are making in your community.

Stephanie Mah
Jun 16, 2018
Jun 16, 2018

Wow Juliet, you move me by your story. How I wish and hope to bee like you moving from one place to another, educating on health .more courage, keep on educating and encouraging families, God bless you.

Juliet Acom
Jun 20, 2018
Jun 20, 2018

Thank you Stephanie.

Change begins with you - use every opportunity you get; start with your neighbours, friends, family or even local church. Inevitably you will get referred and invited by communities outside those you know.
God bless you as you reach out to others.

obioma nwachukwu
Jun 20, 2018
Jun 20, 2018

Oh Juliet that's a great job you are doing there for humanity. Thank you for using your own experience to save other people's lives. Keep up the good work.

Juliet Acom
Jun 21, 2018
Jun 21, 2018

Thank you Obiama

ARREY - ECHI
Jul 18, 2018
Jul 18, 2018

This is wow, Juliet,
Thank you for using your experience to bring hope to parents and many others suffering from sickle cell. It is heartwarming to see many more join the fight to break the silence and stigma around those living with sickle cell. As someone who lives with the disease, I know first hand how it goes and the reality of fathers blaming, even abandoning children with their mothers is so real.

Courage as you keep going.
Warm hugs and love from a warrior to a warrior mum.
Arrey

nandini hoon
Aug 27, 2018
Aug 27, 2018

beautiful story and so inspiring .loads of love and blessings coming your way!

Juliet Acom
Aug 27, 2018
Aug 27, 2018

Amen!

Thank you Nandini. Your words encourage me to keep doing this work

MAPENZI
Oct 30, 2018
Oct 30, 2018

Hi am Getrude from kenya i have sickle cell anaemia and i would like to learn about sickle cell patients in uganda kindly contact me via getrudemapenzi07@gmail.com or my whtsapp number +254702222406

Juliet Acom
Oct 30, 2018
Oct 30, 2018

Hello Gertrude,
It's an honour to meet a sickle cell warrior on world pulse.
I look forward to exchanging information with you and learning about how you are managing in Nairobi.
I shall get in touch through WhatsApp as soon as possible.
Kind regards